chordoma dance

farewell

2010-02-07T20:24:00.001-05:00

The dance is over, as much as I want to stay. But my partner is gone, and I can't pretend anymore.

Many thanks and love to all who have read this, supported us, and kept us in your mind and heart.

Please don't stop.

I won't.

My new life in the land of Widowhood will be chronicled on the blog www.eatinggrief.blogspot.com.

Hope to see you there.

With love and gratitude,
Candace

sardines

2010-01-23T16:09:00.000-05:00

Sardines, I would tell Rich. Compared to you, that's what other men are.

Aw shucks, he would say. Though neither one of us were sure what I was talking about, I meant it as a supreme compliment, and he took the bait.

I look around now, and mumble to myself, sardines, that's all that is left swimming.

Sardines, I'm told, are good for regulating the rhythm of the heart and reducing bodily inflammation. Frequent consumption is desirable.

But as much as my body wants, my mind files everyone as "not Rich, not Rich..." and I swim away, heart still pumping to another rhythm.

Candace

splinched, again

2010-01-18T11:07:00.000-05:00

Once before in this space (May 6, 2008) I wrote about being "splinched." As a reminder for those not familiar with Harry Potter, this is a magical mode of transportation whereby thinking takes us to the place we want to be. But in the beginning, few can do this neatly. A torso or leg is in Place A while the rest of us has moved on to Place B. Confusion results.

So these days. At times, a certainty that I'm in one piece, that I've made the move neatly, all parts intact. So confident, in fact, that I attempt to move further into places that may hurt.

Last week I returned to Memorial Sloan Kettering to question another absurd bill that, I thought, Rich had settled months ago. First, I'm asked for Rich's ID card. Rich is dead, I say (isn't this true of most MSK patients, sooner rather than later?) The rep gives me a disgusted look. She taps, taps, taps the computer. I wait. Ten, fifteen minutes.

"You can pay at the cashier," she says.

That's not why I'm here, I repeat. I'm questioning the bill, not paying it.

Back to the computer for a few more minutes.

She rips a sheet off the printer and hands it to me.

"This is the number to call," she says. "You can't see anyone. It's confidential."

"The bill is confidential? You mean I can call someone to talk about it, but not see someone?"

She nods, yes.

What to do? Off to the hospital cafe, where how many times I don't remember, I bought a scone and latte while my love was somewhere upstairs having nasty things done to him. And I waited.

This time, all I'm waiting for is the bus on the corner to take me home. I'm okay, though. I munch and sip and attempt to read the newspaper but I can't, I'm losing my mind to other days when we will get through this, just get through this...

No more "we." I'll get through this. In one piece.

Until a man walks by carrying an ersatz plant from the gift shop. It's made of some sort of felt, an orange and yellow imitation of a sunflower. It is singing.

You are my sunshine...please don't take my sunshine away...

I separate, sliced down the middle, and liquid erupts.

Splinched, again.

Candace

where we belong

2010-01-09T19:55:00.000-05:00

...the loyalty we feel to unhappiness -- the sense that there is where we belong. -- Graham Greene, "The Heart of the Matter."

Tonight I'm packing for my first trip since Rich died. The first in five years that will not involve surgery or radiation or another medical procedure, that will not include Rich, that death will not be the mistress hugging him while I pretend she's a temporary fling.

Of course, I want to kill her. Before she takes him from me.

I don't need the usual carry-on. Even that's too much for someone traveling light. Anyway, that case hasn't been unpacked yet from its time at Hospicare. Zippered open, Rich's T-shirts and sweatpants and pajama bottoms hang out, still not bagged and donated. I can't, not yet.

But I can travel from unhappiness. A necessary place to visit, and I do, often enough. But that's not where I belong. Because Rich won't be found there, and I will be damned if I let that mistress thinks she won.

Candace

and: a life

2010-01-07T15:31:00.002-05:00

It is good, and it isn't.

It is good to receive a letter from a former student of Rich's, thanking him for his support.

It isn't good because the letter is addressed to Rich, not knowing that Rich will never read or answer it.

It is good when, at a dinner at a friend's house, another guest recognizes me, although I'm sure we never met. She makes the connection. She was the volunteer massage therapist who visited Rich at Hospicare.

"He always spoke of you," she said. "He would just light up."

It isn't good because in the last days Rich doubted if he loved me enough, or at all. I had no doubts, and couldn't relieve this added agony in his too-big repertory. Hearing her words confirms what I know -- ouch, again.

It is good when joy and excitement shoots through me, as it does, more and more.

It isn't good because the emotion stops dead, unshared.

So I'm living the "and" life, of wanting and not, of remembering and not, of loving and not.

In not having to choose there is relief. And not.

Candace

jigsaw

2010-01-03T14:50:00.003-05:00

So you must not be frightened...if a sadness rises up before you larger than any you have ever seen. --Rainer Maria Rilke

To those who know Rich, it will be no surprise that he was good at putting together jigsaw puzzles. To those who know me...I'm not.

So, as a challenge, I once bought what I thought was an insolvable one: A cheese pizza broken into 1,000 pieces, mostly red (sauce) and (yellow) cheese, with pieces of brown (pepperoni) scattered throughout.

He set it on a table, and over a week or so, in his spare time, would neatly attach this section, then that, and within a couple of weeks -- done. He applied a coat of shellac, framed it, and mounted it on the wall.

"Rub it in," I said.

Looking at it made me not only a bit jealous, but also hungry. I could taste the hot cheese, sensuously stretching itself through teeth, lightly burning tongue. It became real.

But it was only a puzzle, not the real thing at all, soon to be broken down and eventually gone to the landfill. Even when brilliantly pieced together, puzzles are only broken pieces, inanimate and temporary.

And yet and yet -- this puzzle that is gone forever, the days of Rich and Candace -- is a sadness varnished and framed, bigger than life, terrifyingly real. I can still taste it, I am still hungry for it, at many moments I can't understand how we became nothing more than broken-down dead pieces.

What satisfies, a little, is knowing that puzzles are solved not with "why" but "how." How to move on...how his memory may continue to bring me (and others) joy...how to attach this piece to another and then someday say: Done.

Candace

reason to live

2009-12-31T21:16:00.000-05:00

In the hot early days -- and pretty hot later ones, too -- Rich was my reason to live. Body, mind, spirit -- all contained in the other until the chordoma years emptied his, and drained mine.

After the burial, after the memorial service, after the first wave of financial and legal commitments, came the fall. I needed a container for grief, as once I had one for love.

So I began pouring myself into morning and evening Kaddish, into healing meditation (for me, for Rich, for us), into a fixed place where everything could spill out. In these times there are, mostly, tears at the beginning and joy at the end; sometimes the reverse. And I can be assaulted at any time by his absence.

But lately I have been awaking hungry. For love, again. To love someone, again. And rejoice that nothing has changed.

Rich, once, was my reason to live.

He still is.

A love-filled new year to all -- and many thanks,

Candace

coming into focus

2009-12-27T19:33:00.003-05:00

The mind rambles backwards, trying to skip over the two months -- and two days -- ago, the past year, the past five years, until it settles on a blurry Rich that doesn't come into focus, and then ricochets back to this time a year ago.

Across the valley are two towers, traditionally alight with two numbers that change at midnight on 1 January. Last year, the "0" remained as the "8" became a "9." We made a habit of watching this, our bodies close (yes, this is the New Year's Eve excitement in our town).

"Will I see this again?" he asked.

"I hope so, love."

He knew what I knew but didn't want to know, and knew better than to expect a real answer.

Rich couldn't imagine not being here, and I couldn't imagine being without him.

But here the body kicks in.

And it proclaims: What's the problem? I'm happy. I'm eating. So much energy! Let's live!

Doesn't it know the loneliness, the missed touches, the empty bed?

For now -- always, really -- I trust the body that feels love, not the mind that seeks what has changed forever.

Candace

paradox

2009-12-22T19:30:00.004-05:00

We are one day past the solstice. Humans, from first awareness of this astronomical good news, rejoiced with maximum revelry and minimum sobriety. Even though they also knew: The worst is yet to come. Winter, in this part of the world, is only beginning.

Other mammals aren't fooled. They slow down. They grow more fur. They wait for the sun to be more than an ornament. They aren't troubled by the apparent paradox of more light and more ice, snow, frigid air. They're like Ralph, now listing to his right and pressed against Rich's photo.

But he's missing out on the best part. He will never be human (he's too cute, anyway) until he learns the joy of living as paradox.

Which is more than tolerable. It's pleasure. Because Rich continues to teach me in the way lovers do, with surprise and joy as he leads me into a place I could never have entered without him.

We're both heading home, wherever that may be.

Candace

walden on trial

2009-12-16T19:59:00.002-05:00

I have begun re-reading two of my most treasured books: Thoreau's Walden, and Kafka's The Trial. Both I read for the first time on the edge of life, when I was perhaps twelve or thirteen. In one I saw the life that would be mine; in the other, I saw the inexplicable tragedy that life could become -- but it wouldn't happen to me.

I held Thoreau's words to my heart: I wanted to live deep and suck out all the marrow of life...I did not want...when I came to die, that I had not lived.

A life lived in experiential awareness could not go wrong.

Of course it did, more than once.

Josef K., Kafka's creation, found himself principal actor in a farce morphed into tragedy, which may be entertaining to watch or read but, in this case, it was his life in which "he did nothing truly wrong."

At tonight's bereavement support group, a participant, a widower of two years, challenged me when I said that I do find at least a sliver of joy in each day.

"How is that possible?" he asked. "What do you do?"

Mostly, I said, I don't try to fill the holes with my head. I don't ask questions, and I have no answers.

And I haven't left Walden.

We must learn to reawaken...by an infinite expectation of the dawn, which does not forsake us in our soundest sleep.

Or in our deepest tragedies.

Candace

slumber my darling

2009-12-14T19:18:00.004-05:00

Day 50

This is the day I will again put on my wedding ring. So I decide upon awaking. Why not? Others do, even when their lover, their companion, their world is gone. Nothing prohibits this.

First I try Rich's ring on my right hand, middle finger. Too heavy, too big, I can't carry the weight.

Back to mine, then. Right hand, left hand, but I cannot, I cannot, who do I think I am? Not a sham, this I will not let myself be. I toss it back onto the top of Rich's dresser, to be buried among his clean socks and underwear (what will I do with them?) and the blue knit scarf he made for Ralph, a hundred years ago.

This is the day after Rich's Memorial Service, when friends from high school drove four-plus hours through rain and ice to tell of Rich the football lineman, Rich the smart boy who (politely) corrected the math teacher's errors, Rich the nicest guy who never made a big deal of any of it. And the next speaker was one of Rich's colleagues who confirmed everything we all knew, and then a friend who spoke of Rich's faith, one that was light on the theory but heavy on the experiential.

I spoke, too, though I don't remember much of that part. What sticks are those who filled the Great Room at Hospicare, the abundance of food, the laughter, my joy in our shared love.

This is the day when I listen to the CD given to me by Hospicare's music director, who with harp and voice performed at yesterday's service the song she did for Rich through the summer and into autumn...slumber my darling...the night's coming on...you, you are the world to me.

I didn't know about this lullaby. I know what I miss so much, and who I miss, but how much else did I miss along the way?

This is the day I was going to end this blog. But I cannot end it, not yet, because I will miss all of you too much, and I need you with me along the way.

With love,

Candace

lighting up

2009-12-10T19:19:00.004-05:00

This week I returned to Hospicare for the annual "Lighting the Landscape." Strands of bulbs were wrapped around trees, shrubs, fenceposts, symbolically representing those who died.

Every memory lit up, four months' worth. Of his caregivers whom I came to love -- and loved Rich -- and all the meals I heated up in the kitchen, and the hours every day sitting with Rich in the garden, in the Great Room, in his room, number five, at the end of hall...

How could he not be here?

Because I felt him ripping at my heart, every step.

Like the old days, I open the door and see John having dinner. He jumps up, hugs me, says it must be so, so hard...and Theresa, how much she misses him, misses me...and Kathy, the nurse on duty, who jogs down the hallway for a hug...yes, yes, yes, they say, they will do everything possible to be at Rich's Memorial Service.

That will be in a few days, in the Hospicare Great Room. To say "thank you" to all who cared for him, to fulfill Rich's repeated anguished request how can we thank everyone, to believe that the best cure for love is more of the same.

Candace

Ralph

2009-12-08T13:17:00.003-05:00

Today, I found Ralph under a pile of books and papers.

Five-plus years ago, he came home with Rich, a gift from Sloan Kettering. One and a half feet tall, 100% pure polyester, with a "Polo" emblazoned red scarf around his brown furry neck, Rich immediately named him: Ralph the Care Bear.

At first, he was -- well, an inanimate object, made in China and donated to Sloan Kettering patients by designer Ralph Lauren.

But soon we gave him a personality (bearnality?) and soon after that we forgot that he was our creation.

He sat with Rich on the rocking chair.

"Fight the chordoma, Ralph," Rich would say, and we would see a fierce look in Ralph's eyes.

And he joined us for dinner, sometimes, propped between the candlesticks.

When Rich hurt, Ralph looked sad. When we asked him questions -- will Rich get out of this, what's next -- he looked thoughtful and hopeful.

When I said, once, that Ralph was useless, he wasn't curing anything, Rich defended him.

"He's not a cure bear," Rich clarified. "He's a care bear."

About this time a year ago, at the beginning of the final unraveling, Ralph disappeared. Maybe I moved him, maybe Rich did; I don't remember. But he was gone from the table, gone from the rocking chair. Our fantasy couldn't help, not anymore.

Today, I lift Ralph up, wiping some dust off his scarf. A heap of polyester, nothing more.

Then I look into his eyes.

Dazed, stunned, sunken with sadness.

He is my reflection.

You didn't fail, Ralph. I didn't fail. We cared, that was all we could do.

Candace

retreat

2009-12-07T18:17:00.003-05:00

Day 43

Don't write about what you know. Write toward what you want to know...in making that peculiar shotgun leap toward what we supposedly don't know, we transform our vision of what we are.

--Colum McCann

I always knew how "Chordoma Dance" would end, and I guess you did, too. The suspense was not in how Rich got over the chordoma, but how we got through it. Rich's footwork was dazzling, always; I lurched and stumbled behind him, damning the road we were on but helpless in making it safe from the bombs that exploded here and there, at first, and then -- everywhere.

So I did a retreat, verb and noun.

Removing myself from what didn't matter into the world where the only thing that mattered was leaving no matter how much Rich tightly held to life, and I held to him, but the grip slips while moving backwards and I had no answer when Rich, near the end, pleaded oh, E.T., how did this happen, how did we get here.

Being on retreat for the past years would explain nothing, I knew; only a front-row seat into the pain and sorrow that would dissolve neither by ignorance nor knowledge but by sucking it into the hole left by that boy who loved me more than I could ever absorb.

I try not to look backwards, much. I look forward, a little. I cry, a lot. And I soak in the love that remains.

Candace

zigzag

2009-12-02T20:48:00.003-05:00

Day 38

It's nine at night and I'm eating cold oatmeal. This is supper.

If it were you who died and Rich survived, what would he be doing?

So asks the bereavement counselor.

Eating cold dinners, I say, and we laugh.

I start answering, but zigzag into I can't believe he's not in the world and don't know where I'm in the world and then end -- as if this isn't already obvious -- that when I get out of bed in the morning I have no idea what Candace-without-Rich will do or say. Sometimes she runs off to a movie and stays out late, sometimes she's in her pajamas by sunset, sometimes she starts filling out yet another after-death form and soon finds herself away and gone at a cafe where she's having a latte and making a list of what must be done.

And it's okay.

Candace

living koan

2009-11-28T10:51:00.004-05:00

A shallow box holds it all. A few physics books, to remember. An 8x12 black and white, photographer unknown, of Rich as a young graduate student in T-shirt and khaki green Boy Scout shorts, adjusting a piece of the experiment. A pen, once it was his, no other reason. His business cards, for no reason at all.

And a pocket-size cobalt blue plastic comb, found on the third look through his desk drawer. This is the day's find. Breathing in comes the aroma of his after shave, of his body. Breathing out I cry.

Cleaning out Rich's two offices should have been quick. His separation of personal and work life was almost total. I found what I expected. Files neatly arranged, books arrayed on shelves, all ready for another day of work.

Almost all of it, I leave behind. The books and the files along with some awards, a few name tags, his name plaque removed from the office door.

What remains is the tsunami; literally, the place where the "harbor" and the "wave" meet and destruction is inevitable. Exactly what will vanish, or be moved, or left unscathed cannot be predicted by my usual crutches of intellect and belief.

What emerges is the koan, appropriate always but becoming most alive in times of death and dying (which is pretty close to always...). Zen teacher John Tarrant writes: "The situation is insoluble and you hang around with it and something shifts to another level."

Or, as others have said, koans are can-openers for the mind. What do I see? A nauseating mass. Not who I am, no way.

Tarrant suggests an antidote: With every out breath, breathe the words I don't know. Do this for minutes, for years; while sitting, standing, waiting.

I cry because I don't know.

A shallow box is enough. More than.

Candace

distractions

2009-11-24T10:54:00.004-05:00

The envelope, please.

Today's winner of the Most Absurd Distraction Award --- the MADDY --- is a much-crowned champion, tough to beat in any MAD competition.

It is: The IRS.

And it has nothing to do with Rich.

They are interested in my mother, who died almost two years ago.

Give us, they say, her forwarding address.

No wonder we fear the IRS.

They are God.

But like all worthy MADDY contestants, the IRS cannot be ignored. They must be responded to and (temporarily) dispatched.

These days, all is absurd. From the Latin absurdus, "out of tune," this applies to conversations, news reports, and what I once called reality. I am trying to avoid the conversations and the news, all of which assault me with notes thunderous and dissonant, but the reality of my illusions --- where would I be without them?

Perhaps where Rich is. Far from me, now; and as it should be. The dead have better things to do than chat with the living or file IRS forms.

As I do, but I'm not officially dead. I'm weary of expectations that I'm the same -- minus Rich. And so distractions are hurled at me, as if I have learned nothing in these past months and years, as if the person before 25 October is the same as afterward, as if I have "plans."

I have an opportunity, of course. Or I can continue as before, knowing that the most deserving winner of the MADDY --- the envelope, please --- is me.

Candace

blank

2009-11-19T19:56:00.002-05:00

Day 25

On Wednesday, I collapsed.

Because there was nothing more that had to be done, immediately. Or at least for another 24 hours.

Grief doesn't dance. It's too heavy, too thick, too sad, absorbing my thoughts and my words.

I'm blank.

Candace

entering the stream

2009-11-15T17:17:00.003-05:00

After the last breath, the wedding ring came off. Rich wouldn't need it; he was now traveling light. Then, mine.

But my load keeps getting heavier and heavier, and I wonder how much weight a heart can take.

His clothes. My walks, in light and in darkness, not one step he has not taken, not one that we haven't taken together. Our memories, now sliced in half, destined to vanish.

There was no way to prepare for this.

Except by entering the stream, alone. No one can do this for me. Grief unbound bruises, but cannot kill what is already dead. Rich and I are in opposite positions now. His container is gone, but his essence moves onward; my container still walks and eats and breathes, but my essence is in the stream, flowing out of me until one day it will cease, and off I will go into a new land.

Meanwhile, my mantra is revived.

Fuck this shit.

The stream needs to know that I can swim.

Candace

Rhinoceros, Ionesco dialect

2009-11-11T15:34:00.004-05:00

The problem is, I'm not literate in Rhinoceros.

I doubt if anyone is, but the Rhinos' grunting so brilliantly confounds obscurity for clarity when the matter at hand is transparent simplicity that most of us, in self-defense, sprout horns and say, I understand!

I don't. But I'm trying my best to become bi-species.

Today, back to the Verizon office. With my social security card, required for transferring the contract from Rich to me.

My Rhino rep regards me cooly. He asks the same questions as on Saturday. Why changing? Because Richard is dead, I say. He asks for an ID. I hand over my driver's license, again. Put in your social security number, he says, indicating the electric pad on the counter. I wait.

Don't you want my card, I ask. We got this far on Saturday.

The numbers, he says.

But there are no numbers on the pad.

He frowns at me, then hits a button on his computer and the numbers appear.

We wait. He chats with another Rhino. I catch myself rubbing my naked third finger, left hand, a habit of late. Maybe it will become a hoof. I hold onto my social security card, my humble offering.

He looks past me. You're done, he says.

You don't need my card? I was told on Saturday --

I don't know who told you that, he says.

I go for a long walk near our old home, up and down and around the gorge. At our -- my -- new home, more Rhino works await, piles of them.

Tomorrow is still another day.

Candace

birthday boy

2009-11-09T17:41:00.003-05:00

Today is Rich's birthday. Would have been his fifty-eighth. He never spoke about making it.

A year ago he wrote on his chordoma website: "57th birthday. Happy to be here."

I was an occasional reader of his site, not wanting to follow his precise charting of symptoms and surgeries. They were too much like prayer. A source of comfort for Rich, but only a reminder for me of how hard he was trying, how hard but he would lose, he would lose, it was futile.

Better to focus on the day-to-day living, I thought. Not to pretend that the chordoma wasn't eating away his life, but to immerse ourselves in the life that was shrinking.

I haven't made the shift, not fully. And I don't want to, yet. Life is still "ours."

For the past years, and especially the year now ending, whenever I wasn't with Rich I was in a hurry to finish what I had to do, knowing I had to be with him because soon this would not be an option. And when I was with him -- whatever strength I had was siphoned off, then I found more, until the day ended, always until almost the end, with words from him to me, and me to him: Tomorrow is another day. Sleep well, my love.

Happy birthday, my love. Sleep well. Tomorrow is still another day.

Candace

new moon

2009-11-08T18:02:00.003-05:00

Day 14

Although the wind

blows terribly here,

the moonlight also leaks

between the roof planks

of this ruined house.

--Izumi Shikibu (Japan, 974?-1034?)

I can't find Rich's grave. Three are in a row, muddy mounds heaped high, all fresh within the past two weeks.

How will we find each other next time around, Rich asked, not too long ago.

We found each other this time, I said. We will again.

He shook his head, doubtful.

Oh, E.T., you have no sense of direction, he said.

I cry. I'm not a dog, I can't sniff him out, sight is all I have and blurriness doesn't help my navigation. But Rich is the only one extending outward from the evergreens; the burial coordinator made this decision because, in this orientation, I will be able to rest shoulder-to-shoulder with him, as always, my right leaning into his left.

As if our bodies will be together. As if they were ever apart. I don't know which is true, but right now I want his flesh, not his energy.

Someone left a bouquet on his grave, wrapped with an ecologically-minded straw string. I leave my apple core, and take another loop around Greensprings, meeting a mountain biker, then four hikers. From their expressions, I'm guessing they're here because it's a nature preserve. I'm here because it's a cemetery.

On the way home, I stop at the Verizon office to terminate Rich's cell phone. Dying is easier. But there's no energy in me for hot anger, only a lukewarm pissed off that is gone by the time I'm back at the house.

And I listen on my phone, for the fifth or sixth time, to his last messages to me from Hospice.

Why did I never hear them before, even though I said I did, of course I did?

They began with hope, in the first days, and ended with tears, with Rich crying it's over, it's over, I can't hold on any longer, oh, I love you so much, so much...

Now I'm opening my heart to the love. All the way, now that this heart is ruined.

How else can the moonlight get inside?

Candace

dying is the new living

2009-11-06T11:14:00.003-05:00

We begin to look at death...face-to-face...and find that it is our own image reflected back.

--Trudi Jinpu Hirsch-Abramson, Zen Center for Contemplative Care

During the hellish month of June, I wanted Rich to watch a video produced by the Zen Center for Contemplative Care (www.zencare.org/film/film.html). Okay, he said. Me sitting, him leaning on his four-legged cane, the video began.

There are only two feelings, love and fear...we leave because we have some place else to go...coming back to the live moment is the greatest healing...

I pulled over another chair, and Rich sat.

As the words and images caressed us, of a 57-year-old woman dying of cancer, of a burly Zen priest not holding back on tears of compassion -- he looks like he used to make cement overshoes, Rich said -- of Trudi's hand being gripped by a woman near death -- I felt a shift in us.

"Your life is going forward," Rich said. "That's more important than mine."

We held hands, my right in his left, gripped tight.

I could not pull him back into a life reeling backwards. And he was not pulling me into death, the place of no past, no future.

We shared the now, without fear and with love, understanding that there was no separation between living and dying (except one still has laundry and taxes).

I hold onto Rich's photos, his clothes, his imprint on all of me. This is the hurting part, the part that will dissolve into time.

But what is growing -- exponentially, Rich would say -- is an eroding of borders between past and future, between love and fear, between life and death.

Candace

everywhere

2009-11-03T18:29:00.003-05:00

Today I returned to Rich's last home. Familiar faces all, furniture the same, view from the Great Room still of pond and fading trees.

We miss him, they say.

I brought a cake, I say. Carrot, his favorite, in appreciation for all you've done.

I have some coffee, hug, smile some, and they tell me return anytime, we miss you.

It was harder than I thought. Everything is.

I appreciate the assurance that Rich is in the trees or in heaven, that he's a butterfly or a breeze, but this is precisely the problem.

Because the world is saturated with the Rich of body and words that are gone, gone.

Even a damn bench, splintery and faded, shouts here was Rich. There he waited for me over five years ago, outside the doctor's office.

"I'm feeling better," he said. "Doing pretty good today."

"Probably nothing, then," I said, the first of the many lies to come.

Twenty minutes later, everything would change when the doctor read the biopsy results.

But on the bench, Rich pulled a bagel out of his attache.

"How did you know?" I asked.

He knew I was hungry. He knew what I always wanted, my default meal.

Today, all I know is that I don't care if Rich is the brightest star in heaven.

Stars don't bring bagels.

Candace

no expectations

2009-11-02T19:54:00.003-05:00

Day 8

Eat when hungry. Sleep when tired.

--Zen wisdom

Phone call from the hospice social worker.

"How are you doing?" he asks.

"I'm eating breakfast," I say.

I don't add: An early breakfast, these days. It's only ten in the morning. Dinner ended near midnight, alone. Ditto the night before, with a friend. And the night before that, with another friend.

I'm doing as expected, I say. I don't mention the toilet plunger in the kitchen, not sure why it's there. Or Thunder was six morsels away from starvation, until I remembered to buy another six-pound bag. Or I'm wearing Rich's sweatshirt, four sizes too big, but his hugs are still in it.

He says, yes, it's a dumb question for such an enormous loss.

But what's expected, exactly?

I am paying the bills. I am washing the dishes (the plunger -- because the absurd food disposal is belching again). I am walking, twice as far today as yesterday, my lungs pumping and my legs happily sore.

I am eating when hungry. I am sleeping when tired.

Sometimes I don't eat much. Always I sleep, wouldn't miss a minute because Rich is the star of my dreams, taking me on a tour neither of us signed up for, but what a guide he is.

I have no expectations, mostly.

Except I will never stop loving Rich. Always, this is enough.

Candace

out of shape

2009-11-01T18:51:00.002-05:00

Day 7

One week.

I go for a long hike near our former home where we ran and walked thousands of times. Up and down and around the gorge, my heart is pumping, legs burning -- why is this so hard? This was once a warm-up for the day. Ah, I need to get in shape again.

It's been months since I walked this far, this steep. The last time, with Rich --

Damn the memories to hell.

How can Rich be everywhere, but not here?

There are his trousers, braces still attached to their buttons, there are his shoes, neatly ordered by color and function, his socks, everything waiting, waiting...

I'm still sane, but dropping the pretense.

Nothing the mind mumbles can soothe.

Because my heart knows that he's gone, and I'm not sure how it will get into shape again.

Candace

saying it all

2009-10-30T10:33:00.004-04:00

Day 5

I was doing fine without tissues. Until I received messages from two high school classmates of Rich's who, on Saturday, celebrated their 40th Reunion. Rich was looking forward to being with them but, as one said, he held on, to be with them as best as he could.

From one:

Many times I mentioned him to friends and co-workers, and I was like 'hey, I know this guy Richard Galik and he's the most brilliant person I ever met, and probably the most brilliant person that ever lived, and I went to school with him and he was in my class, and I graduated with him...'

And from another:

He was definitely the smartest guy I ever met. Even better than that though, he was even a nicer guy than he was smart. That says it all.

I can imagine Rich half-smiling and rolling his eyes at reading these praises, and then telling me stories about what he admired in their lives. What Rich had was a rare quality of not making more of himself than he was, but also not less. And that is how he treated everyone.

Which is good to remember, because in the last years, and especially months, Rich's tumor uncovered pieces of himself which he could not control, and even then he was more concerned how his physical implosion and sadness and anger were eroding my life.

I would apologize, sometimes, to the Hospice staff.

This is not who he is, I would say. He is the sweetest guy, always.

And they said of course, they knew that.

But I need to apologize, too. For those I hurt who, I guessed -- only a guess, I can never be certain -- were hurting him. For those I hurt on these pages. For those who hurt others because I hurt them.

Today I will visit Rich in the meadow, as is my habit, my joy, and my sadness.

Candace

the road goes ever...

2009-10-29T11:45:00.003-04:00

Day 4

Yesterday we returned Rich to the earth.

A wet day, clouds hugging the almost-bare trees, a downpour as a friend pulls in the driveway. We're going to the funeral home to be with Rich before his last journey.

Rich is beautiful, wrapped in a muslin shroud, while in the background there's jazz playing.

I like hip funeral homes.

There's no sadness as we touch him, as he touches us. Death is the most meticulous destroyer of separation.

Lisa, the funeral director, and Jim, her assistant, lift Rich into the back of the van.

Jim, a retired school teacher, wants to tell me something. When he saw Rich's death certificate, he had shivers.

"I couldn't believe it," he says. "My father died of chordoma. He was 56 years old."

And all that could be done in those days, he says, was get a diagnosis, and then go home to die.

So, another member of the one-in-millions Chordomite family.

By the time we arrive at Greensprings the rain is light, and soon drops to a drizzle, and then a mist. But the friends keep pouring in, doubling the twenty or twenty-five estimate I gave to Lisa. It's noon in the middle of a workday, and I'm amazed and grateful.

We put Rich on the cart, jogging downhill through a muddy meadow that, when I bought our plots in May, was a wildflower field. Rich is lifted from the cart to the slats covering the grave, and then I say the best words I can.

We lower Rich into the earth. We cover him with pine boughs. I take three shovelfuls of mud and toss them down, and invite everyone to do the same. As I squat at Rich's head and watch this somber slip-slide dance -- no one falls -- there's a thick rectangular stone that calls to me. I get up, and find Jen, Greenspring's burial coordinator.

"That's the one," I tell her.

In a year, when the earth settles, I will have it engraved and plant shrubs or flowers in this soil that is more stone than dirt, yet produces grasses and flowers and evergreens.

Jen puts her hands together at her heart and bows to me. I return the gesture, and notice she and Lisa are crying.

I'm not. I have been, and will, but this is a moment not different than when Rich and I met, 36 years and 2 months ago. For no reason at all, I knew: This is everything.

Rich, then wearing a crewcut and his old Boy Scout shorts -- Eagle Scout, actually -- talked to me about his passion for physics and lacrosse and The Lord of the Rings and there was nothing in this that appealed; all of this was on the opposite side of my world.

But being with this boy made me so happy.

Still does.

And that is why the words I read were his words, a gift from Tolkien. He would post them on my dormitory room door, when we thought our road together was only beginning.

But it was not, just a meeting at one time, one place, and we're still on a road that goes ever on.

The Road goes ever on and on

Down from the door where it began.

Now far ahead the Road has gone,

And I must follow, if I can,

Pursuing it with eager feet,

Until it joins some larger way

Where many paths and

errands meet.

And whither then? I cannot say.

Still round the corner there many wait

A new road or a secret gate,

And though I oft have passed them by,

A day will come at last when I

Shall take the hidden paths that run

West of the Moon, East of the Sun.

May Rich's life be a blessing for all the world.

Candace

the last dance

2009-10-26T15:22:00.002-04:00

Rich died as the sun was setting on Sunday.

He died in exceptional peace, returning to his Rich-essence, smelling sweet and so, so beautiful.

But how many hearts he has broken, how many tears water his way -- I cannot count. Friends, yes. And the staff with us in Rich's final hours. For Meghan, on duty only a few weeks, this was her first Hospice death, and she began crying when she confirmed what I knew -- no more heartbeat, no more breath, only silence as I rested on his chest.

John, of course, to whom I gave Rich's electric shaver, and who with Meghan and me washed him for the final time, and gently placed his head on the pillow, and covered him with a fresh sheet.

And when the funeral director rolled him out of Room #5 -- the best room, the corner room with view of pond and field and autumnal forest -- I kissed and said good-bye, handsome, I love you so much -- she cried, too.

"You must see this all the time," I told her today, as we made the final arrangements.

Not really, she said. There isn't as much love as you might think.

I write because I'm numb. Because I still don't get that this sort of love isn't everywhere, no big deal.

But now that Rich's body is gone, I don't know what will be left behind, or how explosive grief can be when mixed with high-octane love.

Over the past months, I have taken notes. In the days to come there will be many to thank, many phone calls to be made, many rabbits and mice to kill (that's Thundercat speaking; we all grieve in our own way).

For now, thank you for reading this, for all the past days.

For the future, I plan to continue this blog for 49 more days, as Rich and I move on.

In gratitude,

Candace

ready

2009-10-23T16:43:00.003-04:00

A brief note. Rich has one, perhaps two days left. A week, says one optimistic nurse, but she loves him too much. As many do, I realize.

No more words, too weak, except five this morning, said loud and with unfathomable effort. To me, resting on his chest, where I still find a peace more soothing than the goosiest down pillow.

"I-am-ready-to-go."

Yes, I murmur. Thank you. I will miss you so much, so much.

How we live is how we die. And Rich never took on a task he couldn't complete with success and integrity. The last item on the list, checked off.

Tonight I will be sleeping at Hospice, until the end. The staff has arranged for a bed next to Rich, so we can be together one or two more nights.

Then I will go on, ready or not.

Candace

seeing what we wanna

2009-10-18T11:02:00.002-04:00

Rich is near death.

Even those who know -- don't.

Theresa, an aide who always tries so hard, says Rich is hungry, he wants dinner, it's eight at night and he hasn't eaten since one...

"I'll take care of it," I say.

Out of the refrigerator she pulls a plastic tub of ravioli, a tub of soft spirally pasta covered in red, and now she's opening the vegetable bin...

"I'll stir fry some vegetables...he probably won't want the ravioli, it's out of a can..."

"The pasta doesn't look much better," I laugh. "Go. You have other things to do. This I can take care of."

I bring the microwaved spirals, a dozen or so, to Rich.

Rich?

That's who I wanna see.

I bring the fork to his lips. Hungry? I whisper.

He doesn't open his eyes. Slightly shakes his head, no.

I eat the dishful, and go back for more.

I once believed that humans can know God, but can never be God.

I could even produce theological proofs.

Now I know what I have always known, but didn't wanna see -- the opposite is true.

During these past months, I occasionally slipped back into, as Stephen Levine writes in A Year to Live, the "recognizable neighborhood, no matter how unsatisfying." And too limiting, and too small, and Rich isn't going to see Jesus or Buddha or Einstein (well, maybe).

He is going to see himself.

Then why Rich's broken-hearted sense of defeat and anger that is interpreted by some who visit as "now peaceful"?

Because he can't yet see, and sadness is not the same as peacefulness, and we see who we hope we are, not who Rich is.

And why my nauseating grief?

Because I know this neighborhood, in which all of the world was mine.

And I don't wanna leave.

Candace

who he is

2009-10-13T10:13:00.004-04:00

Because I know myself very well, it is difficult to say who I am. -- Taiso Eka

"I am dessert," Rich says.

"That sounds profound," I say. "Or it may mean nothing. Not everything incomprehensible is profound. Or true."

He closes his eyes.

He has better things to do than listen to my gobbledygook. Trying to cough up phlegm, for one, but he doesn't have the strength, and I rub my fingers over his neck, feeling the bulge of the tumor growing, growing, remembering back five years when we first noticed this and thought, oh, just a misalignment of muscles, just nothing, nothing.

Rich came to know the name of what was inside of him. He tried to understand it with precise charts and measurements and CDs on file. But he never became his illness. As he never became what did not matter.

"Professor of Physics," I tell the funeral director when she asks for his work, his position. This is needed for the death certificate.

"He would gag," I then say. "Rich was not his title."

And he would be suspicious of any student that insisted on saying doctor, or professor, and not calling him by his name.

"We're colleagues," he would say. "I just know, maybe, a little more."

Truly, he knew himself very well.

Now, I don't know what he knows. He has entered what Zen masters call the "empty field," the incomprehensible place that can be touched in meditation where there is no object, no goal, yet liberates all desires, all "self-ness," all that is not.

Rich didn't do meditation. But as I watch the tumor swell and listen to his rasping breath and hold on to what still is, I know that he is far ahead of me in a place that is incomprehensible.

And true.

Candace

a new script

2009-10-08T21:22:00.003-04:00

The tasks are narrowing. To one big one, and that accomplished today. Funeral arrangements, now set. I wonder why this is bearable.

Afterward, I go to Rich, and I close the door on the world. For a little while longer, it will be "us."

Two days ago, the Hospice "Women Singing" group gathered in the Great Room. Rich was in his chair, eyes half shut, but still eating a dozen forkfuls of a pasta casserole, a thin wedge of quiche, a few crackers.

As they waited for others, the women talked among themselves, and I looked at Rich. I knew exactly, word for word, what he would say.

He did, exactly.

"Men wouldn't be giggling."

Of course not, I agreed. They would be doing more important things while waiting, such as planning a war.

Rich nodded, approvingly.

I never was much for giggling and Rich never was much for war -- except when ruthlessly playing Risk -- but we had our script for almost every circumstance, playing the parts that made us laugh.

Today the words are cut further, limited to I love you and I love you too, as he grips me with his left hand and moves in and out of sleep. No food today, no juice, he doesn't leave the bed.

"Your eyes are still so blue," I say. "Ocean and sky, together."

He opens them, and looks at me.

"I'm ocean and sky," he says.

So this is why I can still laugh (not giggle).

But this is why I also cry.

Candace

open door

2009-10-05T15:05:00.003-04:00

I marked Saturday as a day of rest. Visiting Rich, preparing some food, a walk, paying bills, some cleaning, some learning, perhaps write, a list for the coming week -- nothing more, just a day of rest.

I received what I needed.

I was flat-on-back sick, doing none of what I planned except drinking tea and eating some food, none of which I could taste.

A bug, I know; but I prepared a good home with an unlocked door. What this bug saw -- okay, I know viruses don't "see" but this is metaphor, just metaphor -- were Times Square-sized lights: NO ONE HOME.

For the Saturday and the days following (though, slowly, bug's bags are packing) I have been trying to move back. No -- not back. There's no place to go back to, as much as I feel and fantasize. Who I once was is gone, what I once thought can't be tasted, and although this has happened so many times before -- every day, a little -- holding on to what isn't prevents digesting what is.

What is: Rich is dying, perhaps slower than expected but it doesn't matter much if it is tomorrow or next month or even later. It will be too soon, and I won't be ready, and he surely isn't. Neither one of us is ready to open the door, even if there is no lock.

Candace

before the gate

2009-09-25T21:23:00.003-04:00

At the end of the second century there lived in Babylonia a Talmudic scholar named Abba Arika, who came to be known simply as "Rav." He left many glorious quotes on how to live, and how to approach death, of which one is my favorite:

Man will be called before the judgment seat of God to give an account for every legitimate pleasure he denied himself in this world.

I have been thinking about these matters. We are not here to seek suffering, but to uncover and share the joy that we may call our soul, our essence, our God.

These are, in the Jewish tradition, the Days of Awe. In two days, Yom Kippur begins, the holiest of days because on this day the accounts come due, the gate closes, and our soul, our essence, our God answers the big question: In the year to come, who will live? And who will die?

Rich shall not live. But neither shall he die.

Because a gate has something on the other side. Maybe it's about the law of conservation of energy -- what is created cannot be destroyed. Where Rich is going is where he once was, and will be again, and in the time in-between he gave others the pleasure of his work, myself the pleasure of his love, and never denying that his life was so, so blessed.

And he enjoyed good Scotch whisky, single malt preferred.

Rav would be pleased. I expect God will, too.

May we all have a sweet year,

Candace

ditto

2009-09-22T21:26:00.003-04:00

Rich is sinking.

Today he ate some supper. I fed him a small wedge of quiche, a few pieces of yam, some grains of rice. Yesterday he still tried to use his left hand, with some success. Today the effort was gone.

And he slept, a lot. For the first time. He never slept during the day.

He didn't say much.

"This sucks."

Couldn't argue with that.

And when Jeff, the social worker, stopped by and held his hand, and asked why he was in the dining room and not outside, Rich had a quick answer.

"Because the Fibonacci numbers are better here."

I laughed. Jeff looked at me, uncomprehending.

"Look at a sunflower," I said. "Or find a physicist to explain."

So I hold onto yesterday, when Rich didn't say much, either, except one sweet eruption.

"I love you so, so much. More than anything."

I held his hand.

"Ditto," I said.

He didn't laugh. This, for years, was our shorthand for expressions of affection.

"Say it," he said.

I hesitated. Because I didn't want to cry. But I did.

"Thank you," he said.

And now I think of all I need to thank him for, but there's no time left.

Candace

questions

2009-09-20T21:25:00.008-04:00

She died while I was drinking tea.

She was a newbie at Hospice, arriving about two weeks ago, in the room next to Rich.

She died alone.

We heard her final moans, but didn't know they were her last.

"Everyone is suffering," Rich said, eyelids partly closed.

It was that sort of day. Quiet, mostly. We didn't speak much. He asked questions I couldn't answer.

"How is this different than death?" and "When will this end, E.T.?"

Tonight I assisted Theresa, another extraordinary aide, in moving Rich from the Gerry chair into bed.

"What's the difference?" he asked as the preparations began.

"Between what?"

"This and bed."

Another unanswerable question.

But the move went well. I pointed out that, for the first time in months, his feet were not swollen, the rash and peeling gone.

"As sexy as ever," I said.

At this, he smiled.

I said nothing about his matchstick-thin legs, muscle vanished. But I looked, and I will remember.

Before leaving, returning my mug to the kitchen, the undertaker passed by, rolling out what was once a person who had dreams and fears and, I hope, love. But now she was a corpse, zipped up in the velveteen burgundy bag that all the undertakers seem to have, no choice of color.

I bowed my head, and John Donne's meditation whispered: never send for whom the bell tolls; it tolls for thee.

But not, yet, for the boy next door with sexy feet and skinny legs.

There is a difference.

Candace

lost

2009-09-19T20:43:00.002-04:00

Three days ago, Rich said when I arrived: They almost lost me last night.

I nod, and ignore. After all, over the past ten weeks he said they lost his food, his meds, his laundry, and none of the accusations were true, only products of frustrated confusion. How could they lose him? He's a big guy.

But the next day John says, you know, we almost lost Rich, and pats Rich on the shoulder, relieved and shaken as he tells me he went into Rich's room after I left, and Rich was staring vacant, frozen, unresponsive.

A seizure, is the best guess, and I'm not surprised. As the chordoma expands, it will reach deeper into Rich's brain. Fortunately, both John and Flay, the most experienced nurse, were with him, and didn't panic (though Rich wonders how could he take meds from a nurse named flay). Probably, this will happen again, and again, while I watch him wander further from the person I call "Rich."

Joe, the designer of Hospicare's prize-worthy gardens, is also a talented musician. Yesterday, as he has already done several times, he stopped by and played the piano. Under his flannel shirt was a T-shirt inscribed: "All who wander are not lost."

Rich's motto, now. Mine, too.

Candace

beginnings

2009-09-12T10:53:00.003-04:00

Scenes from this week:

1) A wedding of a resident's daughter, the date quickly moved up. Hours pass while the twenty or so guests wait on the lawn, darkness comes, rain clouds appear. At last, after much care by the staff, Mother is wheeled out, outfitted with wig, a chiffony lavender dress, high heels. I shiver. But the bride and her other daughter are beaming, and Mother tells her daughter she looks lovely, and I take Rich's hand and tell him we probably should have celebrated more.

What was there to celebrate, he says.

2) President Obama is on the television screen, giving his health care speech, while we are in the Hospice living room. Rich is in his chair, wanting to see this; Natasha the housekeeper is leaning next to me on the sofa, and John the aide has taken off his new sneakers and is rubbing his feet.

In Russia, says Natasha, everybody gets care. You understand? Everybody!

I do.

You need a hot soak for your feet, I tell John.

He isn't listening. He's waiting to hear if he can get health coverage while working full time as a musician. If he can, he will leave this job.

John gives Rich a shave without being asked, brings blankets before Rich starts shivering, and always gives me a hug and tells me to take care of myself.

For the moment, I've become a Republican. Screw care. I want John to stay.

3) Sarah offers me use of her kayak, any time. She's the Thursday dinner volunteer, and I linger in the kitchen, stirring ice cubes into Rich's hot cocoa. He's not alone, so I don't rush; friends are visiting and they're laughing and even if Rich is not, smiles are more therapeutic than tears. We talk about a lake trip together, maybe next spring. "We" is Sarah and I.

A week of new lives beginning, for the bride and the immigrant, maybe for John, slowly for me, and all the way for Rich.

Something to celebrate, for all.

Candace

always

2009-09-05T22:06:00.003-04:00

In the last moments of the day, my head resting on his left shoulder, everything is right. We speak only of a world bright with love, with each so, so sorry for hurting and disappointing the other.

We can't have conversations much, not anymore, not without Rich sliding off into a new place whose language I can't understand.

I can't understand how we got here so quickly. Even if, this week, it has been 36 years since we met. I can't remember Rich walking, smiling, mowing grass, knotting his tie.

One moment, at the end of the day, remains.

"Sleep well," he says, always.

Sleep well, my love. Always.

Candace

camelot

2009-09-03T21:57:00.003-04:00

My voice mailbox is full, says the disembodied messenger. It's all Rich, beginning in the first week at Hospicare when he sounds so healthy, by turns frustrated and hopeful, still concerned about getting his computer up and running and still believing that, with physical therapy, he too would be up and at least walking, a bit, and needing warmer clothes because the snow will start flying before we know it.

And then, a few weeks in, there's an early morning message.

"I think this is the end, E.T.," he says, and then there's a break.

He's crying. And he's the only person who ever calls me E.T. because he thinks I'm far removed from this world, and maybe, just maybe, I can take him to my far-away land where it's never too hot and never too cold and no one gets too sick or too sad and love never comes to an end.

He chokes out the rest of his message.

"You have to write down...there are so many people to thank, how will I thank them all..."

He doesn't call much anymore. He can't remember how to use the phone, and his voice is weak. But today, lying in his Gerry chair in the Hospice garden, he appreciates the rare streak of dry, sunny, cloudless end-of-summer days.

"Camelot," he says.

Huh?

"Like E.T. land. Perfect 365 days."

He seems satisfied.

But his expression soon changes.

"What will we do when the snow starts flying?"

It would break my heart to answer, so I don't, and soon this E.T. won't know where to call home.

Candace

fat and sugar

2009-09-01T09:56:00.003-04:00

Sunday 3 a.m.

I'm falling off the edge. Awake, heart racing, I cool down, drink water, answer Thunder's howls. I breathe, I think, I decide: Let the garbage fly. I'm taking a vacation. Not of the Disneyland sort -- though a pretty good scene could be written with this as backdrop -- but in the vacare sense, the original meaning: To vacate, to empty, scything through the noise while focusing on my life and death, Rich's death and life.

Sunday 6 p.m.

Four of us are in the Hospice kitchen -- myself, the nurse, the nurse's aide, and the graduate student volunteer. At last, a resident has moved in who can still eat "real" meals -- Rich's had been supplied by his private brigade -- and the kitchen smells of garlic and onion, vegetables in the pan, brownies in the oven. We're talking about some of my favorite topics -- Broadway, food, travel, while I boil water and rip open a packet of "Hot Cocoa with Dark Chocolate Flavor."

"This is destroying my real food bona fides," I say, adding a few ice cubes to this Frankenfood mix, a bastard offspring of cocoa and milk.

While I measure the drink into a sippy cup, the volunteer shows me a list he's made.

"Everything I Should Have Asked Candace First," he calls it. Grammatically, not a perfect sentence (unless First is my last name, or I'm royalty, or a pope), but I'm flattered that I'm his go-to guru for places to go, shows to see, careers to consider.

I'm more than a slave of the chordoma, more than a pit bull protecting Rich.

"Rich never liked hot cocoa," I say, preparing to return to his room, leaving laughter behind. "But at the end, it's like the beginning, just like mother's milk. Fat and sugar, that gets us going and takes us out."

The volunteer grabs a pencil.

"I have to write this down," he says.

I laugh. This is proof I'm alive. And this will change as soon as I reach the end of the hall, as soon as I position the straw for Rich, as soon as he says, this place is a zero...why did you put me here...

Then, he offers me his drink.

I shake my head.

Why are you starving...I can't figure out...

Vacare. Harder to get to than Disneyland.

Candace

garbage

2009-08-27T11:22:00.002-04:00

All the blinds are down, the curtains drawn. It's five in the afternoon, and Rich is wondering why it isn't yet dark because it must be night, why is the clock a lie.

I'm squeezed onto the edge of the bed, my head on his shoulder. His door opens, and the nurse's aide comes in, just to empty the garbage, she says. Rich shakes his head, disgusted. I pass her the mostly-empty bin over the bed. It's on her list, I say. She's doing her job.

"They're bothering Rich and Candace," he whispers. "For garbage."

Once, he called garbage his life. A world of work, achievement, fulfilling obligations, meetings, plans.

It's wearying to explain to visitors that, no, he doesn't want entertainment, or distractions, or the latest on their lives. He needs help dying. Few want to hear this. Fewer know how.

I don't know much, but I'm learning. I know small talk is now more than annoying pinpricks, they're bullets. And so I filter the nonsense I almost say, which is mostly everything I read or write or do. Only those at the edge know how to die, and I'm not there yet, and can't pretend. But I can look at my life, and know its worth is measured in what is not said.

So I touch him, I love him, I watch him crawling into another world, as the garbage flies over our heads.

Candace

nothing more

2009-08-26T09:50:00.008-04:00

Every night, I thought: I will never leave this place happy.

Until last night, when the crescent moon was lying low outside the Hospice door and the Big Dipper was rising in the northern sky.

Because yesterday Rich realized he was mortal. He would die, soon. And all of the blah, the blahs, and the blah blah blah began fading away.

Before leaving, I closed his door and joined him in bed.

Logistically, not easy.

"Put down the railing," Rich suggests.

Though I did this before, and watched the nurses a dozen times, the metal doesn't budge.

No matter. I crawl up and in and soon once more I'm lying on his shoulder, his left hand still moving and stroking, and I fall into the infinite, knowing this will never end.

"I have no evidence for this," Rich says, later, "but love goes on forever. Until the end of time, whenever that is."

I keep my head buried in his shoulder, wetting his T-shirt.

"It's now too late," he says. "To show how much I love you. That you're the most important thing in my life. Always have been."

"Me, too. Always."

We both know this. Always have. And always will.

I start unravelling my body. How did I get into this position, and how can I get up without hurting him and turning my spine into a damaged pretzel?

I remember my yoga practice. How we end the asana is no less important than how we begin. When done properly, what was outward moves inward, and the transformation begins.

We kiss good-night. I leave.

By the next crescent moon, by the time Dipper moves out of the northern sky, by the time Orion first appears...will we be apart forever, or still in this infinite moment...

I laugh at myself. Still not realizing. No difference.

Candace

how I loved you

2009-08-20T21:48:00.004-04:00

Soon you'll leave me, off you would go in the mist of day

Never, never to know how I loved you.

Five years ago, almost to the day. Rich was having some pain in his shoulder, but it couldn't be serious. He was too healthy, too strong, I couldn't imagine...

Still, I knew something.

Carousel was playing (I'm the Broadway fan, not Rich) and If I Loved You began.

He was ironing his shirts. I had to hug him, and I couldn't stop crying.

This was not my normal behavior.

"Oh, you love me so much," he said, momentarily putting down the iron.

"No, no, not enough, and now you're going to leave me, and you'll never know..."

I sounded silly, I knew; there was no reason for my outburst, but suddenly all our years together compressed into a day with barely an hour remaining, and how could I not have known what I had, what I took so much for granted...

"We'll have lots more years," Rich said, hugging me back.

He was lying, but didn't know it.

I don't cry much in front of Rich these days, though the buckets are filled at night.

He worries about me living without him. I assure him I'll be fine.

But I'm lying, and he knows it.

Candace

traveling light

2009-08-17T21:07:00.004-04:00

"Monday was a good day," Rich says, and yawns. It's about 7:30, and he's ready for sleep.

It's not because he remembers the details. He doesn't remember that one of his graduate students successfully defended his dissertation today, and came to Hospice bearing Champagne and cake, celebrating with Rich and accompanying friends and faculty.

He doesn't remember the singer who performed in the Hospice concert a month ago, and who made him cry, and today returned to perform just for him, and he smiled and even sang along a bit -- and as soon as she left, said how wonderful she was playing the harp (which she did not have).

But what matters is that Rich has bravely given up the fight. The assaults of anger and frustration are over, the illusion of walking home are gone.

He gestures to his toiletry kit, where he once stuffed his cellphone, toothbrush, toothpaste, assorted food, the nurse's call bell.

"Don't have much..."

He says more, but I can't hear. His voice is weak, a whisper. He repeats, for me.

"...in my kit now. Only chocolate."

"You're traveling light," I say.

He nods, smiling.

"All you need is chocolate and lots of love, and you have lots of both," I say.

He smiles again.

A good day? Not too long ago, both of us would have been terrified to consider this: His body mostly frozen with paralysis and swollen with neurological edema, his mind grasping little, no more hope in sight.

Except that Rich is leaving in the peace that was -- is -- our love, before and through all of this, and that will remain, even when his body is gone.

That will not be a good day, because I still love him so much. But my kit, too, is almost empty.

Candace

memory

2009-08-15T21:35:00.003-04:00

I'm stirring the tomato soup while John does the milkshake: Big scoops of chocolate ice cream, milk, a bottle of Boost, and chocolate syrup to cover the Boost taste.

"Reminds me of my childhood," I tell John, adding milk to the tomato can. "The soup still smells the same."

"Must have been everyone's childhood," he says, turning off the blender.

John is one of mine (and Rich's) favorite hospice aides. But he's been assigned to the field for the past two weeks, and this evening shift will be a one-off until he comes back to the residence, at least a week away.

"Thanks so much for helping me," he says.

It's selfish, purely. I miss cooking meals. I miss eating by candlelight. Lighting the candles was Rich's job, mostly. The last night before entering the Hospice residence, leaning into the walker, he struggled to hold the matchbox in one hand, the match in another, but he got a flame going on the fat beeswax candle, one more time. Its last time, but we didn't say anything. His last meal at home.

Nothing happens anymore without a memory attached.

I select a pottery cup from the cupboard. Nice, John says; he pours the milkshake, sets out a napkin, I choose the spoon. This is the first meal for a new resident.

The sooner the resident in Room #4 eats, the sooner Rich gets on the commode. It takes two, sometimes three pairs of hands; sometimes I help, sometimes I wait in the lounge, recovering with a tea.

Tonight I take the tea. In a brown mug, bought in England how many years ago, Rich's mug, I bring it so I don't overtax the Hospice kitchen.

Rich doesn't recognize the mug. Today was a day he couldn't pretend anymore, and I wish I could. Do they let you do suicide in Hospice, he asks. Why are the confusing me, he wonders. What an elaborate system they have! How do they make the clocks run like that?

John enters, and Rich smiles. For the first time today.

"We should drink Scotch together," Rich says.

"Anything you want!" John laughs.

I finish my tea. I notice the soup is returned to the kitchen, uneaten. Rich is off the commode, in bed.

We kiss. He smiles. I lean my head into his shoulder.

"I miss this so much," I say.

"You could get a mold," he says.

So practical, still.

"Not the same," I say. "Not the same."

Accidently, I set off his nurse's call button. She enters, smiles, turns off the light.

"Just like Italy," I say.

We shared a story here.

He rolls his eyes.

"Whatever. It all merges."

With John and millions of others, I can talk about tomato soup memories.

But what happens to a memory shared with only one other?

Candace

blank

2009-08-14T22:18:00.002-04:00

I have not been writing. I can't. It's not because there is nothing to say, but because there is too much that cannot be said.

So I will offer a litany of appreciation.

To the indefatigable friends supplying Rich's dinners.

To the nurses who who are there when I'm not and do what I can't.

To all who have travelled thousands of miles to be with us.

To all who have travelled from across the street to be with us.

To the musicians who play for us.

Most of all: To Rich, who in dying is forcing both of us to discover what it means to love, and to live, and to die, and even if we never get all of it "right" -- we at least got it, and what a wonder that was.

Is. Not "was," not yet, and perhaps not ever. Rich is still here, and maybe that's all I need to say.

Candace

a wonderful life

2009-07-28T21:06:00.003-04:00

Two to six weeks, the nurse tells me. Didn't Rich tell you?

I ask him. He says he has no memory of seeing the Hospice physician. I believe him. He can't remember much anymore.

This isn't Rich.

A friend from childhood sends me an e-mail. He remembers the boy who played a winning-is-everything game of "Risk," who was smart, who helped others, who never had a bad word for anyone.

So the man I knew, who was this and so much more (including the "Risk" strategy -- I played with him once, and never again).

I'm now taking care of the details of life that Rich actually enjoyed.

This isn't me.

Soon, there will be no more "us." After so many years, I can't imagine another way of being.

We had a wonderful life.

Before I leave him tonight, Rich sadly mumbles. I ask for a repeat.

"Our marriage went sour," he says.

"When?"

"Last few months. It's been death, not life."

"We had a wonderful life," I say.

He closes his eyes. Go now, he says.

An hour later he calls.

This is Rich. Voice light and upbeat. He will see me tomorrow, have a good night, it was a good day.

And this is what I want to remember when he goes forever, and there will be no tomorrow.

Candace

even to the dregs

2009-07-27T10:56:00.003-04:00

We are in the Hospicare kitchen, the Sunday volunteer and I. I'm heating up Rich's dinner of a friend's home-made calzone and my farmer's greens stew while he's making a grilled cheese sandwich for another resident.

"Excuse me," he says, "but are you okay?"

During the past four weeks, we chatted while preparing our meals. Today I'm silently efficient.

I hesitate.

"My husband is dying. Of course I'm okay."

He assembles a pastor's face. He pats my shoulder.

I decide not to kill him.

Earlier in the day I had a latte at my usual coffee spot. Although the coffee is excellent, it is never served with frou-frou floating atop the steamed milk. Except today, when the barista who knows me, knows Rich, hands me a surprise.

I will have to drink this through a heart.

"Thank you, " I say, going moist. "You made my day."

She smiles, a bit embarrassed, and turns to the next customer.

I decide I love her.

And the heart stays whole, even to the dregs.

"You're such a softie," Rich says when I tell him about my heart latte.

"But not with this volunteer," I say. "I'm not here to make others happy."

And then he tells me about the morning's nurse who, he says, is angry with him, and he says he will try to behave better.

"You're not here to make her happy, either," I flare.

He looks at me, bewildered.

"Aren't we all here to make others happy?"

I say nothing. I put my head in his lap.

I decide my heart will stay whole, even to the dregs.

Candace

leaving

2009-07-25T10:34:00.002-04:00

It's more significant to leave than it is to arrive.

--Michael Collins, Apollo 11 Astronaut

Life at Hospice runs backwards. Each day will be worse, and when it's not, when today the loved one smiles once, or eats more, or curses the nurse, we outsiders who visit say oh! she's such a fighter, or he's so tough, or the doctor gave her only two weeks but, look! it's now five...

What silliness we speak. They're all leaving, sooner rather than later, and it's not because they're weak-kneed cowards.

They -- and soon everyone reading this -- will be explorers, too.

Michael Collins said it well. A hundred years from now, he said, humans will still remember the Apollo 11 landing on the moon, but more as a footnote. What will endure is the journey of Apollo 8, the first of the missions to escape the Earth.

Leaving behind everything familiar is the heart-breaking part. Explorers are honored and remembered not as much for what they found, but for their courage to go. After all, many of the "Great Explorers" got lost, didn't know where they were when they arrived, and never made it home.

I know Rich has to go. He doesn't want to. And I wish he were not taking so much of me with him.

Candace

more dung

2009-07-20T22:08:00.004-04:00

It's easy to be grateful to all the good people in our lives.

But the loads of dung are what keep me sane.

Pile #1: Medical bills for Rich's last experimental procedure, an "out of network" event. In what other business would practitioners charge thousands for what surely will fail?

Pile #2: Today's visitor (again) flogging his religious agenda. Rich is too polite to tell him to fuck off. I'm not, but he visits when I'm gone. So I send a fiery e-mail, and the Hospice staff promises to be my substitute pit bulls.

Pile #3: Rich's ice cream vanishes from the freezer, several times. The hungry offender is a Hospice mate who can't swallow solid food, and this is easily forgiven. But now Rich thinks that all his food is stolen, and...thank you, meaningless bills and assholes and food gone missing.

Such dung is insulation for my heart.

Candace

floaters

2009-07-17T10:25:00.003-04:00

Floaters, my eye doctor says. Nothing to be concerned about, quite common, often triggered by stress and depleted qi. Most of the time, they won't cause any problems and should vanish in about three months.

Take care of yourself, he says as I leave; I try, I say. We have known each other for many years, and we both wanly smile, understanding that his advice can't be heeded and my response is of the head, not heart.

Yesterday Rich and I were visited by the resident Hospice physician. Rich knows him a long time; Rich's father was his patient.

"How are you?" Rich asks him, offering his left hand in greeting. This is now Rich's only moving limb.

"The question is: How are you?" the doctor responds, smiling.

"Some days I feel like going on, some days like giving up," Rich says.

The doctor listens. He doesn't say how narrow is the path between the two roads.

Afterward, the doctor talks to me. This is a different kind of cancer, he says; he hasn't seen this before. Unlike most cancers which, in the end, hungrily consume all of the body's nourishment, a chordoma is "benign." It doesn't travel, it wants only to feed itself.

"It's location," I say.

He asks me about the prognosis. I explain what I've seen, and learned. Once the chordoma crawls toward the spinal region that is controlling the lungs...

Rich's breathing is becoming more difficult.

"Maybe a week," the doctor says. "Once it gets to the lungs."

The nurse on duty reassures me after the doctor leaves.

"It will be longer," she says. "More than a week, I'm pretty sure."

This is no surprise, I say. I've known for years this would be the end.

I watch the pair of floaters dancing before my left eye, in the beginning trying to sweep them aside, or turning my head this way, that way, perhaps shaking them loose, forgetting they don't exist out there.

I watch Rich floating away, and what's out there isn't him, I tell myself, he's in here, and he will not vanish.

Candace

pain and joy are one

2009-07-14T19:38:00.002-04:00

please call me by my true names...

so I can see my pain and joy are one.

--Thich Nhat Hanh

Dave's A1 Hauling came for our bed. For $162 and change, Dave loaded onto his truck a mattress both saggy and soggy, one that I could never imagine sleeping on, alone. Or otherwise.

Joy for it's going; we had been wanting to get rid of it for a couple of years.

Pain for the reason, now.

Food is delivered by friends to Hospice almost every night. So much, I'm considering moving our mini-fridge into Rich's room so that we don't consume all of the space in the communal kitchen. It's an international feast, of Norwegian fish balls, homemade pizza, Costa Rican rice and beans, tempeh stew. And lots of ice cream, sorbet, gelato.

Joy for the care with which it is made and seeing the faces who deliver it.

Pain for watching ever-hungry Rich awkwardly fork the meals mostly into his mouth, always some dropping onto his shirt and lap, eating not at a table -- never again -- but half propped upright in his Gerry Chair.

Friends come one afternoon and make music on baroque recorders. Others, a few days later, come with voice and harp and dulcimer for a donations-requested performance, all proceeds going to Hospice's music program, and when Rich hears how can I keep from singing...

He cries. For the first time, almost ever. For joy in the beauty that he tastes. For pain in its vanishing.

Today I took a "day off" to focus on sleep, chores, errands, yoga, and a leisurely cafe au lait. We spoke on the phone, but I did not visit. Rich says I need the rest, and I know if I did not take these 24 hours, my heart would be taken over by a frustrated Rich taken over by a tumor and all the reasons I loved him would be forgotten.

Love him, not loved.

Joy for the past -- and now.

Pain for the past -- and now.

These are our true names.

Candace

a great life

2009-07-05T20:45:00.003-04:00

Rich's identity is being stripped away, piece by piece.

As physicist, for one thing. This life no longer is held in his mind.

As athlete, for another. He no longer tries to walk because the nerves have stopped sending the necessary signals, and in response the muscles yawn and take their rest.

What remains is the best. It's Rich, refined, growing into a peace unseen in weeks and months as the battleground shifts from "beating it" to "bearing it" and letting the chordoma carry him into the land where bullshit ends and life begins.

"Thank you for a great life," I say, sitting in the Hospicare gardens with the sun beaming on us.

"Life is meant to be great," he says.

At this moment, there are no other possibilities.

Candace

wanting

2009-07-01T21:41:00.003-04:00

What Rich wants, no one can give him.

He wants to live.

He wants to work.

He wants to love me.

Instead, visitors bring food. And a boom box, CDs, a message board, flowers, a plant.

"People think they know what I want," he says.

He eats the food.

What he doesn't want is crazy religious talk, or miraculous cures talk, or talk that goes on and on and on.

Because Rich isn't going on and on.

Each day, another piece of Rich is going, and this isn't what I want. After returning home from Hospice each night, I stay up late in a house filled with him and cry and then watch my anger -- not at the illness (the poor chordoma is just trying to survive, too) and not at any god, and not even at his dying (this is a habit humans seem to have). It's at the times we hurt one another, and disappointed one another, and forgot to ask the question that slams into me now, over and over: What if I never touched him again?

I know the answer.

What a great dance it has been. Even if we forgot too many times that, one day, the music would stop.

Rich is still here. This is all I want.

Candace

moving day

2009-06-26T21:05:00.003-04:00

Rich is smiling, alert, enjoying his buttered bagel while I have the same; talking about friends and the day's plans.

Of course, there's something a little odd. He is sitting at the edge of the hospital bed, catheter draining, and I'm on the commode.

"Very comfortable," I say (the seat is down). "Functional furniture."

"Dual purpose," Rich says. "You don't have to get up."

I laugh.

"I'm glad I'm still funny," he says.

Then the slide starts, the pretend-normal scene shifts. His brain is being squeezed and a frantic rat-a-tat begins of I have to take my pills...shave, I must shave, shower...where's the bathroom...

And for the next three hours I'm up, down, running to the kitchen, the bathroom, answering the phone, soothing him sometimes softly, sometimes not.

Then.

"I love you so much," he says. "I'm sorry. I'm so sorry."

We wait for the ambulance to take him to the Hospice facility. We wait two more hours.

This is familiar, I say. Pre-surgery, post-surgery, all the medical visits -- those days all I could do was wait, fast, and think.

And now, nearing the end, we sit together. Waiting for Rich's move to his final home. Fasting because we're both ravenously hungry but too tired to eat as much as we need.

Now, I'm eating a late supper, of whatever. I left Rich to come home to sleep, to shower -- but not think because then I will look for Rich but I won't find him. Only his shirts and shoes and pants that he will never -- no, I won't think.

Rich calls me. Says he's tired, is going to bed, needs to find all the e-mails he sent that are missing.

"I'm so lonely," he says.

Me, too.

Candace

greensprings

2009-06-24T20:23:00.005-04:00

We are now owners of two burial plots in Greensprings, a natural preserve disguised as a cemetery. We will be on a hill, with evergreens on one side and an aspen grove on the other and, this time of year, wild strawberries and daisies and other field flowers I haven't yet met.

This is one of three "natural" cemeteries in the country, permitting no embalming or concrete vaults or $10,000 hardwood caskets. Its motto: "Preserve a Forest. Plant Yourself." For us immortal-minded humans -- what a deal. No matter the errors and omissions of our lives, in the end we will do good. We will feed other beings who will carry us to places unknown, eternally.

But "we" is morphing into "I." When today I tell Rich I will be getting rid of our old, now urine-soaked mattress, he asks about its replacement.

"I'll do a futon," I say.

He says nothing.

Tonight he will be sleeping on a freshly delivered hospital bed that goes up and down and is impervious to bodily malfunctions.

"It's so small," he says to the Hospice nurse, here for her weekly visit.

"It's just for you," she says.

He says nothing.

But he might not be using the bed much longer. I'm hoping -- we're hoping -- we win a bizarre sort of lottery, the one for a hospital bed in the local facility. We're told we have a good chance, maybe even as early as Friday.

No, not "we." He has the chance. He will be moving out, for eternity.

Candace

the best

2009-06-20T18:30:00.004-04:00

We weren't like the rest

We were the best.

I can't stop shaking as I write this, and I can't even remember the other lyrics or the name of this song or the melody, but when I heard it last week, it hit hard.

Because it is in the past tense, and I knew: That is us -- now.

Rich is leaving, and no one can offer him anything more than comfort.

"We don't talk about comfort in yoga," says James, my teacher, after I tell him I'm comfortable while in some odd configuration.

"We ask, 'is this taking you deeper?' If not, it's time to move on."

Together, Rich and I squeezed a lot out of what, at times, seemed like a very odd configuration (what does a physicist really do?) and I know Rich often wondered what I really do.

Together, we went deeper than I could ever have gone on my own, learning how to love and how to forgive and how to rejoice knowing that there was one human being to whom I mattered above anyone (for no reason).

And I cry because I'm not ready to move on.

We're still going deeper, and this time to the most remote place of all.

I'm learning how to let him go.

Candace

practice

2009-06-18T20:29:00.003-04:00

I know why students revere their yoga teachers.

"People think we do magic," James says, watching approvingly as I kick my legs over my head into halasana.

But he knows, and I know, it's something else.

"Practice," he says. "That's all."

Six months ago I couldn't do this. And if it were not for James, I would never be able to do any of what we are doing during today's two-hour private, as he puts me through a sequence created by B.K.S. Iyengar to create "emotional stability."

I don't think about what I can't do. I barely remember that once I had a fear of backbends, that for fifteen years my back could hardly bend in any direction, and that hanging upside down is (truly) the most relaxing position imaginable.

What if I were still gripped by pain and fear? How would I reach my natural state of emotional ease?

I could not. And this is why James and his teachers deserve awe and reverence (though they would brush aside any of this). Because they're not showing us magic, but teaching us a practice for life.

Not that magic doesn't tempt. As I drive home, I still have microseconds of fantasy. When I open the door, Rich will be dressed in tie and braces, walking briskly, going to work, all energy and brilliance...no.

"I fell," he says, leaning on his four-legged cane. "I was on the floor for thirty minutes."

And he took one of his pills at the wrong time.

He's fuzzy, and getting fuzzier. This is what chordoma does.

I couldn't imagine any of this six months ago. Rich couldn't, either.

But we're practicing.

Candace

a clean refrigerator

2009-06-16T10:46:00.003-04:00

At first, it is one spill that needs wiping up. The coffee, from several weeks ago. That accomplished, wouldn't it be nice to clean the whole refrigerator shelf? So I remove the cream cheese and tofu, bagels and flaxseed, dig out from under the kitchen sink the dried-up scrubbing sponge and mostly-full tin of Bon-Ami, and start to clean.

Ah, much better.

But then -- look at those crispers! Filled with wilting turnip greens, just waiting to be compost...hmmm, how old is that beet...there's the oregano! And there's the humidity control -- where did that come from?

By this time, there's no turning back. The top shelf must be cleaned too, and the sides, and when the food is returned it is now like with like -- soymilk on one side, milk and kefir on the other -- and then I notice the kitchen tiles near the fridge are covered with remnants of old food and must be swept, and I circle wider and wider along the floor until every stray morsel of cat food is removed.

Perhaps I have found my religion.

Last week, a wise teacher appeared, a dancer/yogi coming in the guise of "housecleaner."

Cleaning, she says, is her spiritual practice. And she is right. A clean toilet and shower -- and refrigerator -- can repair the soul.

This morning, I knock over the soymilk. Ohshit.

But by now I'm a pro. Quickly, the sponge and paper towels soak up and wipe down the excess, the milk is pushed aside (scowling, I imagine, at this faux milk crawling its way) and calmly begin my breakfast -- until Hospice calls and the mowers arrive and Rich awakes, fuzzy and wobbly.

Ah, well. Souls break. Milk spills. Cleaning happens.

Candace

comfort and control

2009-06-11T19:38:00.003-04:00

A quiet rhythm.

Rich works, mostly from home. His new accessories, replacing the once ever-present tie and suspenders, are a four-legged cane, a walker, two urinals, a raised toilet seat, and, in waiting, a chair for showering and a chair for transport. Plus steroids and a few other pills to limit the steroid's potential damage.

None of this cures, but comfort and control are worth something.

"A good day," he says, as we sip some wine and begin eating the first of the season's greens.

His symptoms, we agree, are moderately stable. He left leg and arm still function, as do bowels and bladder, although numbness of hands and feet is frequent.

I straighten. I cook. I empty urinals. I enjoy visits from friends, occasional cafe au laits, and sleep.

I don't think much. Not about the past or the future because the present moment, I finally grasp, has everything.

And I can't control Rich's desire to control or my inability to comfort.

Still.

His efforts, and mine, are worth something.

Maybe even everything.

Candace

what remains

2009-06-08T12:14:00.003-04:00

May I be I is the only prayer --

not may I be great or good or beautiful or wise or strong.

-e.e. cummings

not strong, not beautiful...hmmm...what's left?

I which is more than I. the unseen I, the I-without-limits, the I that is always there but not seen until beauty descends and muscles grow limp.

not a pretty I. an angry I, a frustrated I, an I mumbling ohshit ohshit ohshit.

what sort of prayer is this?

the only prayer that remains.

Candace

blow torch

2009-06-05T10:39:00.002-04:00

Our refrigerator needs a blow torch.

This week, a previously sedentary jar of maple syrup decided to do a headstand, emptying itself onto its savory neighbors. Mustard and horseradish weren't inspired to follow, but a day later a mostly-empty cup of a week-old latte did. Why I'm saving the latte (it's still on the shelf) isn't clear. I tell myself I will use it in baking a honey cake, which I haven't made for...a year, at least.

And the syrup and latte have solidified.

I say this with no shame. In a world upside-down, this not only makes sense, it is comforting. It is the "normal" that is bizarre. You're worried about that? Get a life!

Still, there are visitors. I don't want them to fall over debris or get assaulted by dust mammoths. So, for the first time in my life, I hired a housecleaner. Schmutz can be put in its place.

I'll take it.

Candace

no more trips

2009-05-31T10:10:00.003-04:00

Burial plot. Hospice. Medical bills.

But also friends visiting, laughing, my going out for errands and stopping at favorite coffee spot where server asks, how's it going, and I tell her, and she starts to cry.

"Cafe au lait," she says, quickly scooping up my mug.

She knows what I drink, and she knows what I want, but for now the drink is the best anyone can do.

We're back from New York. No more trips, I guess. The intraarterial chemo procedure was pronounced a "success." As always, Rich was a good guinea pig, tolerating well the procedure, the 26-hour fast because the procedure was delayed eight hours, the screw-up in pre-procedure tests -- all the while observantly noting the almost-hourly loss of function of his body.

Rich can still shuffle on his left leg, and has use of his left arm. But gone are the right limbs, and numbness is spreading upward into his torso.

Tomorrow I will call hospice for an assessment. We will buy burial plots in a local "natural" cemetery. It doesn't matter, Rich says, but still...it would be nice to be next to one another, in the hills and forests, in walks we can't take today, but who knows...

Candace

another day

2009-05-26T16:48:00.002-04:00

3 a.m.

Rich lurches back into bed. Pissing isn't going well, and getting there isn't an easy ride, either.

"Do you really think you can make it to New York and back?" I ask.

I can't pick him up if he falls.

And let's weigh the benefits versus the risks, I say. Getting up at 4:30 (as if I'm going back to sleep) for removal of PICC and sutures, plus meeting with doctors, and returning home at midnight -- doesn't make sense. We can find someone to take care of the medical stuff here, and why not a conference call?

4:30 a.m.

I cancel bus reservation.

Thunder the Cat howls. Out he goes.

9 a.m.

Rich starts making phone calls. To his primary care physician, twice. Can he remove PICC and sutures? Nurse hesitates; yes, though this is unusual...appointment is made for tomorrow.

Rich calls neurosurgeon's office, they call him, he returns call, they call and we miss it, and finally connect for conference call.

Visiting nurse calls. Rich gives her an update. The IV antibiotic has been stopped, at our initiative. We are to put all of the unused packets in the landfill, not water supply. This makes so much sense.

Thunder the Cat comes in, goes out, comes in. Goes to sleep.

12:16 p.m.

Almost precisely on time, conference call begins with neurosurgeon, radiation oncologist, and, mostly, the physician (interventionist?) who will do the intraarterial chemotherapy. Never before used on chordomas, but with a history for liver, melanoma, and some neck cancers. In this procedure, a nice dosage of Cisplatin (a drug based on platinum) will be dumped directly onto the tumor.

Our neurosurgeon says we have to give this a shot. He hopes we hit a home run. I hope we're not SOL.

Rich cancels tomorrow's local PICC removal.

I make bus reservations. Rich calls one of our amazingly caring catsitters to do yet another two-day stint.

Thunder awakes. Eats. Howls. Goes out.

1:30 p.m.

We head out for lunch. Rich moves unsteadily, but not using a cane yet. That remains at home, though I dusted it off and adjusted the height.

Rich talks about housing and car issues, and my health benefits if he pre-deceases me.

While I drive home, Rich returns a call to physician's assistant to schedule the MRA, pre-op, and procedure time.

After much chatter, Rich hangs up.

"We just learned nothing," I say.

Rich agrees.

I make reservation at hotel adjacent to hospital. Expensive, but convenient. But compared to the cost of the procedure -- as of now, not covered by insurance -- who's counting?

3:30 p.m.

It's almost June but we're both shivering. I start fire.

Attempt to nap.

Thunder howls. Goes out. A rain drop falls on his head. Howls. Comes in.

3:45 p.m.

More phone calls to set up times of procedures and tests, with assistant and her assistant. Except for blood work, we're now set.

"Have a great night," assistant's assistant cheerfully says.

4:30 p.m.

Rich tries to sleep, but can't manage to rest with non-stop spasms in legs.

Thunder howls. A baby rabbit is in his mouth. He stays out.

Time to start dinner before packing and whatever else the night brings.

As always, we will hold the other's hand before eating and say, "Another day."

Tomorrow, too.

Candace

celebration

2009-05-25T09:45:00.005-04:00

Yesterday, while Rich was in the emergency room, I stole away for forty-five minutes. To my favorite coffee place, for sugar and caffeine, and briefly taste another world. I would also get a carrot muffin for him, after he completed his CT scan.

Yesterday's concern: Increasing heartbeat, weakness, some shortness of breath, possible movement of PICC (the catheter snaking up his arm and into his heart, where IV is poured). So, for peace of mind, we went to ER.

A s I drove to the hospital I thought: How many times have we used the many hours we would be in ER to instead relax and enjoy a Sunday?

Forget this thought. It's gone.

So I sip an excellent cafe au lait and watch a two-year-old at a nearby table celebrating his birthday. Or, more accurately, his grandparents celebrating his birthday, joyfully spooning a tiramasu (sophisticated kid) into his mouth, opening his card and watching the bills float away, playing with his Matchbox cars.

And here I am, the anthropologist, absorbing something foreign and intimate, leaving me confusedly sad and longing for what I don't know.

Rich is almost ready to leave ER when I return. He eats his muffin, removes his hospital gown, and we learn that his heart is okay and nothing seems amiss.

That was morning and afternoon.

Then comes evening. His hand becomes numb and fierce pains shoot through as the IV begins. We stop the pump, call the appropriate on-call doctor in New York, and he says hold the morning IV until doctor-in-charge calls. I'm ready to pull out the damn thing, so holding is easy.

And now it's morning again. Each day is worse. Rich is having trouble signing his name. He tries to stand, tries again. Visiting nurse comes. We talk with on-call doctor. Come to NYC tomorrow, he says, we can check it out.

We have other visits scheduled tomorrow, too. But, if we are still able to go, there will be nothing to celebrate.

Candace

the world is flat

2009-05-23T13:59:00.002-04:00

True, I've seen the photos. What we call Earth is a bluish globe, hanging in the darkness, and definitely roundish. But in me is my grandfather's distrust of scientific achievements. When humans started shooting themselves into space and photographing their trip, he still confidently commented: "It's only a movie."

Because nothing in his experience taught him otherwise.

So I assert that the world is flat. This is my experience, because right now Rich is not going 'round and 'round in expectation of returning to the same place. He's falling off the edge.

Which doesn't fit. I sometimes described Rich as the sort of person who, if he decided to take a one-year trip around the world, and said he would return at 5 p.m. on May 22, and I said: "Oh, by the way, pick up a couple of bagels on your way home," I knew by 4:45 on May 22 to have the butter and cream cheese ready.

Because Rich keeps his word, always, and will always come home.

But not now. I'm afraid as I watch him approaching the edge, and as he slides faster and faster I want to kill the bastard who's pouring the grease making his path slicker and slicker -- but, of course, there's no one there.

What I do see is Rich's heartbeat beating too fast, probably because of the antibiotic which, both of us are still convinced, may not be at all necessary. And I see progressing weakness in his leg, pains in his neck and arm, shortness of breath, and some of it (probably most, at this point) is caused by the drugs that will "save" him.

I don't see the edge, not yet (is that because my eyes are closed?)

But I whisper, "it's only a movie...it's only a movie..."

Candace

a new mantra

2009-05-19T09:30:00.002-04:00

Each day now is ripe with opportunity for using my new mantra.

Quite a few such moments happen during Rich's twice-a-day IV antibiotic infusion.

When, while priming, the antibiotic pours out of the tube and we don't yet remember what to push or pull or twist, and meanwhile it's running on Rich's pant leg and onto the floor...ohshit ohshit ohshit.

And when I drop the syringe, now no longer sterile and need to prep another, or when I forget to change the bag, or uncrimp the tube, or Rich steps on his tube and feels it re-arranging itself in his chest, or when it's ten at night and I'm removing the tube and the damn thing is stuck in his arm...ohshit ohshit ohshit.

But When Rich returns from a short walk and says his right leg is weak, and he can't hold it up, we both agree that another mantra is called for.

Fuck this shit.

There is some good news. Rich's spinal leakage appears to have stopped. He can now sleep lying down. He may be able to shower today.

Still, this I know. There will be plenty of opportunity for practice.

Candace

jet lag

2009-05-16T17:03:00.002-04:00

I must be in a foreign country. I don't know the language and I'm eating with the randomness of a time-warped tourist who doesn't care if it's time for breakfast or dinner because it's all the same, and as long as she gets sugar and caffeine somewhere in-between, she will keep on going.

Until she collapses, which is about now.

We're home. So why does this home feel like a hospital?

Maybe because there's an IV pole in one corner, and our mini-fridge that usually houses my baking flours is filled with Rich's eight-day supply of antibiotics, and the visiting nurse comes in and wipes down our dining table with a potent sterilizer that kills every living thing and whose instructions, I read afterward, specify not to be contacted with food, and so I wipe it down while Rich gets his drip, and today I tell her don't you dare, and she says rubbing alcohol is just fine, no problem.

But there are lots of problems.

About the visiting nurses who instructed us in the use of his IV line, four-plus hours a day, and

while helpful, Rich and I have been around hospitals long enough and are observant enough and Rich has experienced more than enough to know that that some of their procedures and instructions are wrong.

About this hellish regimen, to be continued through mid-June. Every marker since the surgery has indicated no staph infection. And we can't get answers. Shall I trust the revered medicine gods when they say they need to be aggressive with this further destruction of Rich's body, not to mention quality of life (mine, too) in these weeks before the aggressive chemotherapy begins?

Of course not. Trusting anyone or anything means we're kissing our assets good-bye -- reason, intelligence, experience, in-the-guts knowing, and becoming a drug-infused piece of meat.

This isn't life. This isn't a good day. I'm the Ugly American Tourist who wants to go home where the food is familiar and I understand everything.

Candace

anniversary dance

2009-05-11T21:28:00.003-04:00

Wednesday is our anniversary, and we hope to be home.

Thirty-one years.

It has been a day. Okay, maybe a week.

Rich, the physicist, can surely explain these time confusions.

And why no amount of time will ever be enough.

Candace

nine-headed Hydra

2009-05-08T21:08:00.004-04:00

Today was a great day. Compared to yesterday, when we learned that Rich had a serious staph infection, and his veins couldn't hold the IV insertions, and we were wondering how many heads this monster had.

"Seven-headed Hydra," I said. "Killed by Hercules?"

"Wasn't it Odysseus?" Rich asked.

I got the slayer right, but the number wrong. Hydra had nine poisonous heads, and neither Rich nor I could remember how they were removed. A magic sword, perhaps?

One head is sufficient. Who needs more? Slaying the chordoma is enough of a challenge. If only we could find the magic sword...

Right now, the most dangerous head is the staph infection, and from what we learned today it is amenable to antibiotics, and six weeks max -- maybe less -- should do it. So today Rich had a PICC inserted in his shoulder, and he will have four hours a day tethered to the IV antibiotic drip, and this will postpone the possible chemo, but his veins will recover (temporarily assaulted by last chemo) and we hope to be going home by Tuesday, and his recovery from the surgery has been brilliant.

As for the magic sword: Not one, but many, held in the hands of all who are reading this, all who have bathed us with their calls and letters and care.

Pity Hydra. She doesn't have a chance.

Candace

I think, I wait, I fast...

2009-05-06T20:30:00.002-04:00

...with apologies to Herman Hesse's Siddhartha, these are the days of thinking, waiting, fasting, especially while Rich is in surgery number five.

Thinking about a cure? Wish I could. Last night, Rich received message from oncologist offering up a suggestion of a drug that has had success for one patient, in Germany. The catch is that this experiment will cost $15,000-$20,000 for a month's supply. Rich is priceless -- but this drug?

And I wait. With Rich in pre-op, at 5:30 in the morning. Surgeon is optimistic he can dig deep and not hurt Rich too much. When Rich is wheeled off into Operating Room 21, I briskly walk to the elevators and down into the cafeteria where I have a breakfast of oatmeal and cinnamon raisin bagel with butter and try not to think what is happening to Rich.

During previous surgeries, I would take this time for planning, for making lists. Now I scoop the cereal with my left hand and hold the pen in my right but by the time the bowl is empty and the last pat of butter is scrapped clean -- nothing is on the page.

Satisfied, I put the blank pad and the pen back in my pack. I think I've accomplished something, though not sure what.

And while over the next seven hours I will consume a latte and a tea and the lunch buffet and an oatmeal scone, I'm fasting. From sleep, from eating (I'm just fueling), from anything other than this moment which is sucking out of me what I once called "life."

Siddhartha found his truth by a river. Maybe mine, too (any coincidence Sloan Kettering is on the East River?)

I didn't remain with Rich long in post-op; I was allowed only ten minutes.

"I never saw a human being heal so well," says the surgeon, who has come to love this patient.

Surgery was a success.

"Now let's hope for some magic," he says.

How long before it grows back, I ask.

He doesn't say anything.

Three months, I suggest.

It's a real estate problem, he explains. There's no room deep in the spine. A millimeter or two, that's all that is needed to cause trouble.

We need to think of other possibilities. Fast. We can't wait.

Candace

killing dandelions

2009-05-02T10:03:00.003-04:00

With less than 48 hours before leaving for New York, Rich has a list. Start mulching, move hay, clean kitchen, iron, laundry, mow, pay bills, vacuum, new door handle...

All of this while I'm still eating breakfast. Almost. He's a flesh-and-blood WALL-E.

Rich finds comfort in a list.

Meanwhile, I pretend, too. Finishing a manuscript for a May 15 conference deadline. Yoga. Meditate. Bake bread. Talk with friends.

Then my neighbor appears outside my window, spraying poison on his dandelions.

Fucking asshole.

I explode. Charge at him in my pajamas, and don't care at all that it's noon and this doesn't make a good impression on his neat, ordered, dead life (these are my work clothes, asshole!)

Nothing changes. He sprays. I fantasize the dandelions rising at midnight, wrapping their hollow stems around his empty body...

I am grateful for him. Without such as he, we would never stop pretending.

Next stop: Miracle House.

Candace

a quickie life

2009-04-30T19:34:00.002-04:00

I planned to fill this blog with all the good stuff on our two-day sojourn in New York, as well as some of the amusing "bad karma" events. I will keep some, and add what I hoped I wouldn't.

First, the funny "something is wrong here..."

The waitress at our favorite bistro approaches us with a bottle of water and two glasses: the glass, for no apparent reason, falls to the floor and shatters.

"Ce va?" asks another patron, watching this.

What to answer?

Then, Rich gets a plateful of what he didn't order. The waitress corrects her mistake, and we carry on.

Our room for the night is causing us watery eyes and burning throat. Toxic cleaning fluids, I guess; the desk clerk offers to send a housekeeper to spray a more pleasant odor.

"But that's just more poison," I say.

We get another room, slightly more breathable (probably already sprayed).

During the night, I feel my way in the dark to the closet for a blanket. My toes crash into our duffle bag; not too hard, but hard enough to rip a toenail in half. No matter, it's not bleeding.

Ce va?

Good stuff: Walking up and down Manhattan with Rich, even though he complains of leg weakness that, I lie to myself, is nothing more than the heat (91 degrees, in April!) and the effect of his chemo pills. We step into the market at Grand Central and treat ourself to a chunk of "Mrs. Quicke's Farmhouse Cheddar," imported from Devon and with the many-noted flavor of the sort of wine I never buy.

Mrs. Quicke (she really is the farmer/cheesemaker) does it right, producing a sensation sequentially musty and earthy, rich and tart, spicy, velvety, tangy, and simply luscious.

Now the news that's so hard to write.

Rich's neurosurgeon wastes no time. Reviewing the MRI tells him enough. Don't go home, he says. We can operate tomorrow. How about next week, Rich asks. We have many loose ends, arrangements to be made. So the date is agreed upon: Next Wednesday, May 6, for Surgery #5.

The nurse hugs us. She's so sorry. Because they know, they have seen this before. Rich's tumor is way too far into the spine, and surgery is now buying weeks, not months, and when it becomes inoperable, Rich will be paralyzed.

Unless a magic bullet appears. For this, he is risking another surgery. Even if it is more poison.

In the hours since, I've hit all of the notes. This is not a Velveeta moment.

I can't ignore the shattering, the crashing, the in-the-guts screaming that says I didn't order this, I don't understand this, and I can't breathe into the future.

Still. I'm holding on to the luscious.

Candace

magic

2009-04-20T13:53:00.002-04:00

Yesterday Rich and I did something we do, maybe, once a year or less.

We went to a movie.

WALL-E it was, and was it terrific, for all sorts of reasons -- environmental issues, technology/human issues, plus the incomprehensible skills (to me) needed to make this magic.

What sticks, though, is the love between WALL-E and Eve. He's an old-model robot who trundles through mountains of trash left behind by the now-gone humans, while Eve serves these same humans, living fat and lazy in a luxury ship deep in space. She's as sleek and high-tech as he is clunky and low, but he has a sentimental heart and, for him, it's love at first sight when she arrives on Earth.

Probably many reading this have seen WALL-E, so I won't say more except this: At the end, I cried. Especially when the two robots touched. That's how WALL-E recognized his love. Because love is transparent enough to travel through space and back, and yet solid enough to save a world. Magic, no?

Tomorrow Rich has another MRI, this one of the full spine to rule out spread of cancer in the lower regions (he has been having some discomfort in his leg). Then it's back to NYC next week for, we hope, a brief and routine check-in with the medical folk with the good news that we can look forward to seeing another movie -- next year.

Candace

clawcuffed

2009-04-10T15:00:00.003-04:00

Last night I was thinking about a lobster. A lobster from my childhood who one day appeared in a tank at the neighborhood supermarket.

Let me explain why this was odd.

It was the 1960s, in Brooklyn, and the store served mostly residents from the housing projects who were predominantly Jewish. Which means few would buy this non-kosher New England-ish food.

Most of us thought he was brought in for the ambience, not for dinner. More like a goldfish bowl than a meal.

Still, this lobster was on death row, and this broke my heart. His claws were tied shut -- clawcuffed! -- but he wasn't guilty of any crime except he was, some thought, tasty.

What could I do? Bring him home and keep him in the bathtub? That, I knew, would not receive parental approval.

Or take him to the Port Authority and put him on a bus back to Maine? I didn't think he would survive such a ride.

So I did nothing. Except let my heart break each time I passed his tank.

Which isn't much different than these days with Rich, although all would agree he is much cuter than a lobster, especially when he's wearing suspenders (Rich, not the lobster). He's clawcuffed by a chordoma, I have no idea how to get him out of the tank, and all I can do is try not to let my heart break.

Candace

a new era

2009-03-26T11:43:00.002-04:00

Rubbing my back, as he does every morning (you can be filled with envy, it's allowed), Rich says that this is the beginning of a new era.

Time tripping, we are. Each surgery, radiation, surgery, radiation, chemotherapy, countless pains coming and going -- we're zooming from trilobite to homo sapien sapien so fast...

Today, new chemotherapy: Tarceva. Who creates these names? Does this sound like a cancer poison? More likely a new hybrid sedan, or face cream, or a chef's signature dish: Chordoma sous Tarceva.

Not everything moves forward. Yesterday a letter from insurance company, unwilling to pay $100,000-plus radiation bill because it is "experimental." Isn't this all? Anyway -- this was approved, we were told, by Sloan Kettering folks. After expelling some bile, we wait and see.

But even if it's raining today, it is Spring, and the days are getting longer and warmer and we've survived -- lived! -- another winter.

How good is that?

Candace

class picture

2009-03-20T13:51:00.003-04:00

It gets worse. Not only did I join my high school Facebook, I found a link to my elementary school photos.

Yes. Elementary school. Black and white group picture, grade 6-4 of P.S. 194, Mrs. Lewis, who taught us to think and have opinions and not take crap from anyone (she was a senior teacher, tenure secured).

I showed it to Rich.

He couldn't find me.

You've been with me for 35 years and you don't know who I am?

Which raises all sorts of thoughts, including the most basic, and the most difficult, and most comforting.

We change, physically. That's the easy part.

But I easily recognize the 11-year-old who knew that what she was learning -- even from a semi-iconoclast teacher -- could not explain the bewildering world.

She is getting closer. Maybe looking at her early years will remind her how far she has come -- and has to go.

Candace

forever young

2009-03-17T11:25:00.005-04:00

I don't know what possessed me. Maybe it was Rich talking about his upcoming 40th (!) high school reunion, which in turn triggered recollections of friends I haven't seen in about as many years.

So I went searching the Internet. And found a website dedicated to those from my high school who died on September 11. Not surprising that there were too many names; I came from a large school with about 5,000 students, and a good number of them remained in New York.

The creator of the website -- a graduate a year before me, I think -- decided to use the page as a necrology for all alum, with emphasis on my cohort. Slowly, I scanned. It was, as I said, a big school; I surely didn't know everyone. What were the odds?

First, Joseph. Joseph! A purely nice guy with a broad smile who played the trumpet really well...we drove to our graduation together, and afterward had a party at his parent's apartment.

Then Jill, a class beauty, taken by cancer. Then Judith, oh no...the older sister of my best friend in whose home during my high school years I spent more time than my own.

More and more names. This one of cancer, when she was nineteen; that one of cancer, he was the brightest of the bright; this one drowned in her suburban swimming pool.

And -- oh -- Miss Hymowitz, my favorite gym teacher, just out of college when she came to us and very, very cool. One day, deep into my senior year when classes no longer mattered, my friend (Judith's sister) and I went to the beach, where we saw Miss Hymowitz...I won't tell if you won't, she said, and we didn't, though we all ended up with lobster skin sunburns that were tough to explain the next day.

Forever they are young, and in seeing them I am, too. We were all going to end the war (Vietnam, then) and never be part of the military-industrial complex or any institution. We cancelled our prom and instead attended protests and had class trip to "Hair." But we never imagined death or cancer or living (drowning!) in a suburb with a swimming pool.

The war that shaped our lives did end. "Hair" is in revival. I live in a quasi-suburb (no swimming pool, but a lawn). And there is still so much time.

Candace

more options

2009-03-12T16:22:00.002-04:00

Heather's comment (see "kefir options") kindled a few more thoughts.

Narrowing options are, I have always secretly felt, the gift of illness and aging. "Secretly" because we (or at least I) think must be busy with multiple faces, responsibilities, always going somewhere. Perhaps this is why I have always been attracted to a quasi-monastic discipline (exempting early mornings, celibacy, obedience, and a few other things). In the diminishing, there is peaceful growth, and what is accomplished may not be broader, but is often deeper.

This cold, for example, which has blossomed into a multi-week sport. I have not left the house for four days, except for a couple of necessary and brief errands two days ago. Rich -- yes, the man with cancer and a cold -- has gone to work, shopped, and just arrived home, still wearing a tie and nice cords. Me? I changed out of pajamas only because I needed the warmth of long underwear.

But -- I've done the most (and perhaps) best writing I have in several months. Because I'm too wiped out to hike or bake or plan a garden or do chores. I'm in joyful communication with friends via the internet and phone (even with neighbors; I want to keep my germs to myself). I just finished listening to a Prokofiev violin concerto, one I never heard before, and realized it has been months since I listened to anything musical.

And I'm enjoying the aging piece. Enormously. Previous decades -- I won't even consider the teens -- were a vortex of questions. What do I do with my life? And with whom? And how often? What about the past -- can I escape? And the future -- where will I go?

This age, at last, has more answers than questions. Or maybe only one answer.

It's good. It's all good.

Candace

kefir options

2009-03-11T11:35:00.003-04:00

I'm lifting a carton of kefir out of the dairy cooler. Next to me, a woman looks unhappy. Her favorite flavor and brand is out of stock. In front of us are twelve options. Of kefir, not exactly part of the Standard American Diet, or even the Enlightened American Diet. Kefir is a fermented milk product that is highly populated with probiotics, living organisms that keep our gut happy. It tastes good, too.

So we peruse the cartons of organic, non-organic, low-fat, full-fat, plain, red raspberry, peach...none will do, not for her.

I have preferences too. Even my cat prefers red raspberry kefir to plain, except when plain is all there is and then, if he's hungry enough, or adventurous enough, he will eat it. Which makes him a more advanced being than most humans (including this one) who piss away their lives in fear of what-has-not-been-explored. Which is the definition of "alive."

Which is not what I've felt this week. The tenacious cold has returned, plugging up my nose and draining my energy. In these moments, exploration be damned; I want a return to "routine" (huh?) and "normal" (huh?)

Which kefir did I choose? The one with the latest expiration date.

"Get the one with the most life," I told my dubious companion at the cooler. "The probiotics are dying as we speak."

We are, after all, what we eat.

Candace

a quick cold note

2009-03-07T16:22:00.004-05:00

While waiting for the radiation effects to appear, Rich has been hit with another treasure: A vicious form of my cold, settling into his lungs and producing basso profundo coughing fits worthy of Boris Gudonov. He has also been sleeping during the day, a rare event even on the worst of days.

But we're home. I'm writing some, again. Practicing, again. Eating good local winter veggies, again. None of this will last, but all of this is better than being stuck in the toilet. I remember this, and laugh.

Candace

out of the toilet

2009-03-04T14:03:00.003-05:00

This was not my first time. Tenth, probably, and never a problem. But this time, the lock on the bathroom door in my favorite Manhattan bistro wouldn't turn to open. Press in, to the left, that's how it always moves, but nothing...

I considered how long I could survive. Plenty of water, for sure. A place to eliminate. And, having finished dinner, food to keep me going for many hours.

Still. This space wasn't much bigger than a coffin. And I had nothing to read.

So I banged on the door. Hard. Several times.

Rich and a friend who had joined us for the evening were, fortunately, sitting near the door.

The waiter said he couldn't do anything from the outside.

Rich told me to turn, turn, turn.

"I can't do it for you," he said, and walked away.

Shit.

No. Think. That would be more productive.

Press the lock. Softly, slowly, with calm and assurance of the outcome, turn -- to the right.

My companions show no surprise when I rejoin them.

Pretty good metaphor, no?

Or, at least -- I'll be careful about locking any doors I can't open.

Candace

thumbs up!

2009-02-27T19:35:00.002-05:00

Day Two of radiation is done, and the radiologist is happy. The beams are on target, the salivary glands appear to be safe, and the dosage -- not too much, not too little -- is hopefully adequate to produce necrosis.

This is only part of the target. The other piece, lower on the spine, received radiation already, and wasn't discouraged. Surgery, we know, is a temporary fix.

So this morning we visit with oncologist to hear about the promised new tricks. We are given the name of a drug previously unmentioned. Not a new cancer drug -- it has been used in thousands of lung cancer patients -- but its track record for chordoma is exactly one patient. In Germany. With results that "seem encouraging."

One patient? Encouraging? Wouldn't a dose of asparagus produce the same, without the side effects?

And what, I ask, about the two drugs mentioned in previous visits?

Well, maybe, he says. But he is intent on this newer possibility, if he can get approval from the insurance company. He leaves the room, and five minutes later comes back, smiling happily and giving us a thumbs up. Yes! We can go to the pharmacy and get it filled.

Neither Rich nor I smile. I don't share the physician's enthusiasm. Rich is not my trial monkey.

Aren't we doing this backwards? To cure, why are we hurting?

So much I don't understand.

But we go out to a favorite bistro for lunch and have our soups and salads and wine, and walk along the Hudson, and the rest of day I'm humming I'll see my love tonight from "West Side Story" and believe this song will never end.

Candace

burning

2009-02-23T16:26:00.003-05:00

When I write, I bid farewell to myself.

---Jimmy Santiago Baca, Poet

In setting down the words, the heat dissipates. This is why any hack can pull off a sex scene, but love's the challenge. The first may be hot, but its purpose is focused and the goal is clear. Love, however, is a landscape shot that goes on and on, diffuse and multi-dimensional.

Okay. I'm a hot bowl of gumbo soup, a chocolate biscotti, and a cafe au lait (yum)away from the fire of a few hours ago.

"Yikes!" is Rich's e-mail message.

We were all set to go to New York for radiation, reservations made, when Rich learns that, by the way, his first session is scheduled for tomorrow, not Wednesday.

"We never do first-time patients on Wednesday," he is told.

Since when? Four days ago?

What to do?

What is the choice?

Rich can be in New York in time if we get up at 4:30 a.m. He makes reservations on the bus, cancels the other.

For some reason, I got angry. But for another unknown reason, it didn't stick. I went for a walk, I sat for an hour with a neighbor's dogs and appreciated their wagging tails, nuzzles, whimpers. I stroked Thunder, our cat, and reminded him to record the karma incurred by the schedule-makers at Sloan Kettering...

But pain is a lot like love. Get enough of it, and each pinprick dissolves into its vastness. That's why I write about it. Because I lose the angry part of myself, laugh at its absurdity, and know that life, too, is much greater than all of its parts.

Off to New York!

Candace

whining sounds

2009-02-19T09:57:00.003-05:00

Whatever a person frequently thinks and reflects on, that will become the inclination of their mind.

--Buddha

During our recent New York trips, I've been on buses and trains a lot. And I decided to pay attention; not that I don't do this at home, but in New York I can hear hundreds of conversations each day from all sorts of people.

And one thing became clear. In this, the wealthiest city in the wealthiest country the world has ever known (and, my guess, will know), people whine. Constantly. Rare was the conversation, face-to-face or, more frequently, mobile-to-mobile, that said anything approximating: I'm fine! Life is great!

To find that, I visited Rich on the neurosurgery floor. There, despite looking like an audition call for a Frankenstein play, men and women (more men, don't know why) with staples in their heads and rips down their spine shuffled a loop or two around the corridor. When complete, they said: Great! I'm doing well!

Not always, of course. Some on the floor could barely raise their heads, and when they did couldn't say where they were. But, still. In any contest, their cheeriness trumped the folks on the bus.

What we think is -- we think -- the only reality.

Now that's a thought that depresses.

candace

about face(book)

2009-02-16T15:26:00.002-05:00

"People with opinions just go about bothering one another."

--Buddha

Not too long ago, I expressed a negative opinion about Facebook. While still wary of its overuse and light use of the meaning of "friend," I'm willing acknowledge its value as a one more way of being close to others. So, my page is slowly filling, with a profile photo now posted and, sometime in the near future, photos of life here and in our chordoma travels. Please feel free to get in touch if you would like to "sign up."

What's next: New York (surprise!) Next week, for eight days, for Rich's radiation. Maybe this will be the first trip in which we have the time and energy (and Rich isn't attached to tubes) to play tourist and absorb some of the good stuff -- shows, museums, visits with friends.

Rich's surgeon says that Rich is a "very good place," chordoma-speaking. I'll take it.

Candace

some moments

2009-02-11T11:31:00.003-05:00

Some moments, I forget that this is a good week. We're home, probably for six more days. Long enough to resume a normal rhythm, but I don't know what this means, not anymore, and I'm not sure what such a thing would be, again.

Some moments, I forget Rich has cancer. He is at work, today for the first full day since the last surgeries. He is wearing a tie and attending meetings. Once this was ordinary.

Some moments, I forget what happens next week, and the weeks thereafter. Radiation and its knock-on effects. Chemotherapy. If they "work," he will be in pain unknown. If they don't...but that's a hundred years away.

So I don't worry. I don't want to waste a good week.

Candace

no chocolate in the middle

2009-02-05T20:17:00.003-05:00

In one of the waiting rooms (more about this soon) I overheard a man saying to his companion: Good news.

Good news?

Yes. He found a place to park near the hospital.

Good news, I agreed; not what we wanted, but put enough stuff into the good news category and, hey, soon we have a good day.

Before leaving for the hospital, Rich receives call from physician at home. Blood tests done on Monday, ready Tuesday but not yet sent to Sloan Kettering, show anemia and low protein count.

Not good.

Meet with neurosurgeon, view Rich's films, and while I cannot see much of anything that makes sense, Rich is disappointed in how much tumor remains which will be left to the uncertain power of radiation and chemotherapy. Maybe he will need blood transfusion for anemia. Eat more steak (tofu, anyone?) for protein.

Not good.

Time to see radiation folks. First receptionist says no, not this floor; when Rich produces his appointment sheet, it's still unconvincing. Go right, left, don't take "B" or "C" elevator, but "R." Next receptionist says no, not me, go across the hall; we do, next receptionist asks for his name and insurance (why? this is all on file) and sends him back to receptionist #2 who slides a folder across the desk and says go left, right, straight, take elevator to another floor.

This, at least, was the right floor. Then, Rich fills out more forms, we wait, we wait.

Then meet with radiation team's resident. Then radiation team's head doctor. Then radiation team's fellow. Then radiation team's nurse. No liquids tomorrow before myelogram, doctors say; clear liquids tomorrow, that's fine, says nurse. Post-radiation, extremely bad sore throat for weeks, says doctor; may need narcotics to control. Some chance of sore throat, just be careful of spicy foods, says nurse.

I'm starting to like the nurse.

Three hours after arriving, we're done. Lunch? We're too tired to know if we're hungry or not, but we eat, and realize we are.

"These are the good moments," I say.

Rich, finishing his three-cheese (protein!) lasagna, quickly comes back with a litany of next week's medical appointments, then back to New York for radiation, then chemotherapy, then...

"This moment," I say.

It's good. This is what we have to add up.

Coming back to our room, we realize the heat isn't working. We are moved to another room.

Good enough.

We end the day with a big dinner (no solid food for Rich for at least 17 more hours), and we are given mints.

"Is there a chocolate in the middle?" I ask him as I unwrap the ball and pop it into my mouth.

He doesn't remember from the last time.

No, there isn't.

Good enough.

It's adding up.

Candace

not making sense

2009-02-03T20:10:00.003-05:00

Rich just emerged from our tundra of a bedroom with a mop. To clean? Surely not. That would make sense. To close a window. Respecting the laws of physics and responding to gravity's pull, it descends without human intervention, noticed primarily on nights that dip into single digits. I'm too short to close it and Rich can't stretch that far, so the mop is his long arm.

And a few nights ago, when Rich was in a funk about his swollen feet (no big deal, said yesterday's doctor), Thunder the Most Mellow Cat begins dashing from doors to windows, howling and bent for hell. Makes no sense, we thought; where's the enemy?

Tomorrow we go to New York for pre-radiation procedures which, I'm sure when read about someday in the future, will make no sense. Nor do they now, but I can't condemn them because I see no choice. Let's poison Rich some more, that's what's next. So he can be well. Or better, at least.

Off we go.

Candace

year of the dragon

2009-01-29T16:31:00.002-05:00

No, it's the Year of the Ox, according to the Chinese lunar calendar. But in researching what this means, I discovered I was born in the Year of the Dragon, and have been confidently breathing fire ever since. This is "the" sign of power, high self-esteem, and overall superiority. Of course, I've known this for years, but confirmation feels good.

We are what we think. Simple. And if we really put some time into this, we recognize that what we think is equally not who we are.

Which leads me to the Crisis of the Day. Rich saw his acupuncturist today, and she is concerned about his retaining of fluids, most noticeable in his feet, right hand, and face. A rash is developing, too. So he has an appointment with his primary care physician on Monday, although Rich is concerned enough that he might seek treatment (if needed) sooner.

But we still had to eat. Off to Ithaca Bakery, our favorite local spot, for soups and breads, muffins and coffees.

"I used to be healthy," Rich says, sadly.

Rich was born in the Year of the Rabbit, and they're known to be cautious types who assess carefully before they jump. So Rich, with his meticulous plots providing plenty of supporting evidence, knows he isn't where he wants to be, and I am tempted to summon my fire -- whoosh! -- and destroy his discouraging data screaming you're sick!

Sigh. I'm not a real dragon.

Candace

drip, drip

2009-01-17T10:40:00.002-05:00

One of Rich's stitches is leaking. Not all the time; mostly in the morning. Still, for the neurosurgeon this is a cause of worry about infection and meningitis. Let me have a look at it, he says. Maybe we'll need a lumbar drain.

Interpreted: Does he think we call a taxi and arrive at his door in, oh, about an hour? Is there no local physician capable of monitoring this? And a lumbar drain means another stretch of a hospital stay.

Rest, that's all I want. In my bed, and from hospitals, mysterious drips, collateral damage, radiation, and continued poisoning of Rich's body.

Interpreted: I don't hear a choice.

Some good news. Yesterday I found the missing mobile phone antenna. I had, after all, the awareness to stuff it in Rich's attache, thinking he might know what it is. Now if was only awake enough to remember that I remembered...

Candace

a balkan invasion

2009-01-12T17:26:00.003-05:00

We're halfway home. Rich was sprung from the hospital today, with no leaky spinal fluid and no pneumonia and bagfuls of pills. Tonight we stay in New York, and home tomorrow.

For the last three nights, Rich's room was busy with visitors -- dozens -- speaking Serbo-Croation and Albanian, attending to a family patriarch with last-stage brain cancer. First day, this was an annoyance; ear plugs helped cut down the noise coming Rich's way.

"We have a big family," a daughter apologized (the patriarch has ten children, plus other relatives I could not identify).

Second day, annoyance slowly gave way to amazement. At the outpouring of family love, at the cheek-to-cheek kisses for all, at the care of wife and a son who stayed overnight.

Today, saying good-bye, we wished the wife all the best in a situation that, she knew, would not get better.

"What a wonderful family you have," I said.

Her English was a bit limited, but she understood.

"Your family?" she asked.

"We have none."

"You? Husband? None?" she asked, comprehending the words but not the possibility.

And I was drawn to her with a kiss on one cheek, then another.

People with large families, I've noticed, often easily assume others into their midst. What's one more?

She asked for my phone number. We kissed again.

All invasions kill. But sometimes the right things are destroyed.

Candace

pneumonia?

2009-01-10T20:52:00.003-05:00

A day that started better, much better. But not where it's ending.

Rich is removed from IV's, is sitting up, eager to shave, bright-eyed and adorable; almost back to his usual self. He is told he can be discharged on Monday.

By mid-afternoon, he is moved from neurological unit to semi-private room where it should be quieter.

Hah.

A non-stop party, loud and smoke-filled, goes on and on. Even after I leave, post-visiting hours, Rich calls me (sans antenna, but not too garbled) and moans that visitors remain, and room has been disinfected for smokiness. And more bad news: His oxygen levels, slowly dropping, have dropped further. Pneumonia is suspected, but we won't know more until tomorrow.

Candace

one note

2009-01-09T20:27:00.002-05:00

A bitch of a day.

Beginning with breakfast at the Pom Pom Diner. Another Miracle House resident, from Alabama, chats express non-stop about Southern warmth and her church choir while I inhale my mozzarella omelette. I'm food and sleep deprived and I remember my father's words to me, before his death twenty years ago: Don't waste yourself on idiots.

Then, arriving at the hospital. Rich is sitting upright, in a chair -- good! first time since surgery -- but he's frustrated and in pain because OT and PT have worked him over and told him he might never again be able to lift himself and he believes this crap.

He tries to sleep. No go; chatter from the nurse's station sounds like we're in Times Square despite signs posted everywhere: "Quiet Helps our Patients Heal."

So shut the fuck up.

I don't say this. Not to the people whose care he needs.

I try to make some phone calls. To extend my stay at Miracle House because Rich doesn't think he will be ready to leave by Tuesday. But phone is not working well...no surprise, really; I discover the antenna is missing. So that was what I found in my pocket and threw out two days ago...who would have known?

I make food forays, eating randomly with emphasis on sugar and caffeine and some vegetables from the hospital cafeteria.

Rich tries to sleep. Blood pressure bounces from too low to too high. Drain from spine hemorrhages. I do this, do that, and Rich is angry and frustrated at and wonders why I keep screwing up.

He's not an idiot. I'm not an idiot. But he's not good at being sick and I'm not good at caring.

As the afternoon spirals down, I make a final sugar excursion to the gift shop.

An oat scone, please, I ask.

Two are put in a bag.

Another idiot, I think; I'm not paying for two!

This is free, she says. You need it.

One note. That's all it took to lift away some of the pain.

Not for long.

It's a cold night in New York. A nice warm room, a cup of hot tea...ah...

But I'm finishing my tea. I have a nice warm comforter. I can't call Rich because we have only one functioning phone and who knows what's next, but I hope to sleep and I hope Rich gets moved out of the neurological unit and I hope not to waste time with idiots such as myself.

Candace

train not running

2009-01-06T15:58:00.002-05:00

Last time, New York was aglow. But Rich's surgery was a week before the holiday season, and everywhere there was the excitement of something better coming, even if we know that such excitement folds and collapses.

Still. I expected something different.

Last time, Rich and I walked through Grand Central Terminal where we saw the train show and I pointed out, look! there's the QT train from the '70s, raw and fresh in sound and appearance.

Last time, we walked to Bryant Park, taking in the holiday kiosks selling pet T-shirts and happy Buddhas, and the skating rink where people did what I never could -- smiling, too.

That was last time.

This time, Rich rested in the room while I went to the train show, but -- where was my QT? Not running. Which, in truth, is closer to reality. In the '70s, much of New York wasn't functioning. But who wants to remember that?

This time, the kiosks were gone, holiday sales over, Buddhas moving on to the Chinese New Year festivities. Some skaters still circled cooly, but many reminded me of my own gravity-susceptible attempts.

I returned to the room. It wasn't the same, I say.

Change is inevitable, exciting, normal. Except when the trains stop running.

Candace

vacation

2009-01-05T13:31:00.002-05:00

From England, a letter received from a friend of many years: Remember the Christmas you were with us? If we could only turn back the clock!

I do remember that Christmas, of roasted meats and trifles, of walks along the Thames, and her family's gift to us, a gorgeous coffee (tea?) table book titled "English Landscapes." To remind us, she said, of what Rich and I loved best about the countryside.

But, like all memories, the book was what the photographer wanted the countryside to be, and what we wanted to remember. In the forward, the photographer was honest. Exquisite views of lakes and fens and architectural triumphs were carefully composed, devoid of imposed blight (even the palaces and churches appeared organically grown).

This was a world without humans, or at least of the post-Neanderthal sort.

Still. It was real.

We have had ten full days home and are now on the road again for Surgery: Round Four. It was like a vacation, Rich said. We walked, tied up some financial matters, ate hot meals with candlelight and good wine, and even squeezed in a wonderful New Year's Day party, joined by neighbors and ex-neighbors, and friends.

Perhaps we are looking at a place that exists only in our mind, but that doesn't matter. It's still real.

A wonderful new year to all --

Candace

kudos

2008-12-27T16:55:00.000-05:00

We're home.

Time to breathe deep and remember, starting with much kudos to those listed below, and many others who we will never know.

To the friends and neighbors who provided loving Thunder (he's our cat) care, and filled our refrigerator with grains and vegetables and jars of organic kosher chicken soup (if that doesn't cure cancer...);
To those who took shovel and snowblower to our driveway;
To new and old friends in New York who shared time, meals, and laughter with us during Rich's hospital stay;
To the amazing people at Miracle House;
To the staff at Memorial Sloan Kettering, whose care, compassion, and competence exceed just about every institution I've known;
To Rich's colleagues who sent him a box filled with CDs and DVDs of "Fawlty Towers" and "I Love Lucy" and other comedic greats;
To all who called, wrote, visited, and kept us in their lives.

And the list could go on and on, gratitude without end. None of these efforts may be enough to "cure" Rich (except for the chicken soup...) but they're more than enough to make this life beautiful.

Candace

frequent surgery card

2008-12-23T14:57:00.002-05:00

Patiently sitting in the pre-op cubicle, his clothes whisked off and his vitals recorded, Rich and I discussed the possibility of the hospital introducing a frequent surgery card, just like cafes, where ten cups of coffee entitles the buzzed-up drinker to an eleventh at no charge. The temptation is to order the pricey exotic options -- supersized cappuccino, amaretto-chocolate latte. But Rich and I almost always ask for the usual: Cafe au lait (for me); basic black, leave a little room for milk (him).

Why can't hospitals can do the same? Especially for frequent theatre-goers (of the cut-me-open sort). After five surgeries (these are, after all, even more expensive than lattes), get a gratis treatment of choice, anesthesia included!

Rich is getting close to having a full card, returning to New York in less than two weeks for another hit of surgery, this one going into the dura in a chase after the wandering chordoma.

Unfortunately, when the bonus kicks in, he can't stick his basic black, leave a little room for milk. He may have radiation one more time, but this time the dosage formerly spread over 40 days will be shot into him in a week. And the chemo options are even more unimaginable -- and guaranteed to give a bigger buzz -- than an amaretto latte.

For now, we're going home. To get ready for the next time.

Candace